Daily painful abdomen

SIcklyhatED

New member
So for the past few years or so I've been having this issue. It's not "I forgot my enzymes" pain, but like a deep, deep aching/bloating pain, mostly in my<strong> left</strong> side. It used to only happen if I'd be sitting poorly for long periods of time, but over the past year since starting college it's gotten progressivly worse. So much so that it pretty much happens everyday without fail towards to end of the school day and it's driving me up the wall. I have no idea what's causing this but I really, really need it to stop. I've been on Creon for about 5 years after a nasty bowel obstructin landed me in the hospital, NPO for 5 friggin days...
I'm studying to be a PTA, so we have lab everyday, meaning we have to wear these flimsy tank tops for allow good body access. This is making me very, very self concious because the pains make my abdomen very distended and uncomfortable. I can palpate that the left more often than not feels... solid? Well, more "stiff" than not that's for sure, but not like I have to go...
Should I just eat a lot of yogurt, or drink a ton of water? Aaaaaargggggg.....
 

Printer

Active member
Two things. before I increased my Creon (under a Doctors direction) I would get a pain every afternoon about 4:00 pm. The increase in Creon cured it. The second issue is a mucus caused problem. The mucus that you swallow, adheres to the walls of the colon, forming "gluey walls". The stool then builds up (sticks) there. In my case I never knew that I was constipated, having several movements a day.

The Doctor suggested MiriLax. No joke, I lost 4 inches in my waist and 13 pounds. I take Mirilax in my OJ for the first week of each month for maintainance. It is amazing what the CF Doctors neglect to mention.

Bill
 

Aboveallislove

Super Moderator
Bill,

I think our son might have that issue since he is too young/doesn't yet know how to cough the mucus up. That would make perfect sense b/c his stoles aren't "constipated" ones, but seem "sticky." And it isn't like he stops pooping. We've been working with GI and CF doctors on his "back-up" issues and are still having issues and keep trying new approaches. He does Miralax for maintenance but after a month of good eating he get's backed-up even though he is still pooping. His eating goes down, his poops become more diarhea, followed by sticky stuff, repeat. and his acid reflux kicks into high gear. Milk-of-magnesia has been the only thing that helps get it cleared at that point, but takes 5 days. Do you have any other suggestions?
 

Aboveallislove

Super Moderator
Dear Bill,

He just turned 3. Do you have any recommendations for a CF GI doctor, in the mid-west if possible, several if you have them. We had quizzed our GI doctor at a major children's teaching hospital if any of the GIs were CF ones there and they said no, but they all treat CFers--has an accrediated CF center. I had just started to try to find one when a course of Flagyl took care of things. But I do think he had a bacterial overgrowth from all the constipation. And now he has just started the same path--he still poops, but has a couple "smaller" poop days, and then has more diarrhea followed by "spurts" of sticky stuff. he's on 2 capfuls of miralax daily and we do milk-of-magnesia when he seems to get backed-up which is the only thing that seems to work. Just finished 5 days and it moved some stuff out, but right now trying to figure out if we are "back to normal". Besides your GI CF recommendations, if you have any thoughts while we wait to get a consult, that would be much appreciated. What you said this morning about the lung mucus lining the walls is the first thing in 2+ years that makes sense. Because that's what I kept saying I thought was happening, albeit with the intestinal muscus "dr., it seems like his poop is just sticking to the intestine walls and just keeps buidling up and up and up until he is blocked." Because his eating just slows down, then goes to only liquids (easier to go around?) and his poop changes. Any thoughts and definitely referrals much appreciated!
 

Printer

Active member
Do you see a CF SPECIALIST at a ACCREDITED CF CENTER or do you JUST go to a CF Center? Does he take enzymes? Is he on Toby, Pulmyzime or Sailine? Does he vest?
 

Aboveallislove

Super Moderator
Yes to all, but Toby--he only has staph and has never been "sick" (no bugs, colds, flus, ear/sinus infections, etc.) just GI stuff. (He's a ddf508 though). So we do Zantac (2x), Xopenex (2x), hyper-sal (2x), Pulmozyme (1x), Enzymes (before all food and high end of safe range), Miralax (2 full doses), and Prilosac in evening. And Vest (2x at 30 minutes) and lots of running/mini-trampoline. Chicago, Detroit, Toledo would be closest. (We are at an accreditted CF Center seeing one of the dirctors.) But my thought is to do a consult sending all the records, etc. since he has all the tests, Xrays, etc. so if you have any thoughts for other locations/doctors (or several b/c I can see not all doctors open to that), that would be greatly appreciated. And any thoughts in the meantime on how to help keep things moving. I think we've past the last sticky batch b/c he's starting to eat again, but this seems like groundhog day and I don't think it's another bacterial overgrowth because other things he had going on then are gone. Thanks!
 

Printer

Active member
OK, remember that I'm not a Doctor, just passing along life information.

Delta F 508 tends toward digestive problems. It sounds like they are doing everything right. Ask one of the Doctors to do a belly x-ray to see how much stool is there. Perhaps a change in enzyme brand will help and possibly a dose increase. Even a temp increase. The better the digestion the better the stool.

Use as much mirilas as you need ie number of days (not dose per day) it can be very slow in getting results.

Call the Cystic Fibrosis Foundation in Maryland (not the local chapter) and ask for a list of GI CF Peds in your area.
 

Aboveallislove

Super Moderator
Thanks Bill. I actually had just gotten names from the CFF before the Flagyl worked, but wanted to pick your brain too. And we do Miralax every day--we just up it if he starts getting backed up and keep at it for a long time (I error on side of a little longer to make sure it's cleared and at least 2 times dh said "time to cut back?" and I said "no" and sure enough he had more "stuck" which cleared. We've already had many belly xrays so we're hesitant to do more unless he is still at a bad spot and I do think we've got this last batch cleared. I just want to figure ot a course going forward b/c this is really hard on him and on us with the constant worrying of ("is he backed up or not" "too much or not enough Miralax") but that might just be life. thanks again for your insights. much appreciated.
 

Aboveallislove

Super Moderator
PS And we had changed enzymes from Creon to ZenPep--about 6 months ago. DS actually said the Creon was hurting his tummy. But it didn't change this issue. And he was on Ultrase before Creon until it lost its FDA approval and he had problems back then too.
 

Printer

Active member
When I first went on Marilax, I asked the Doctor how long I should take it. His answer, until you get diahrrea.
 

Ratatosk

Administrator
Staff member
DS had similar issues as a baby and while he was still stooling, albeit looser, he had a LOT of stool backed up in his colon. We used milk of mag from time to time when he'd have issues. His doctor indicated that with constipation issues -- big distended belly it may be tempting to decrease enzymes; however, in ds' case was better to increase. That darned sticky mucus can do a number on the digestive tract. I do know of a few people who take mucomyst orally (bleah) to help cut the crud (mucus). DS also had issues with adhesions from his orginal surgery as a newborn, so his digestion was slowed way down to the extent that his enzymes weren't getting to where they were supposed to, so he ended up with a blockage a few years ago. Once we got him cleaned out, he's had normal stools. But one of the issues we ran into with our GI expert at the CF clinic was because DS was within the 50th percentile, we couldn't get them to take our concerns seriously, which including the distended belly, greasy stools also led to periodic vomiting episodes.
 

Aboveallislove

Super Moderator
Thanks so much. We have the same issue b/c growth is "good" they think all is well, but I explain he gains 2 pounds in a month and then nothing for two until he is "cleaned out" again.
Would you only have adhesions from a surgery? Bsides the mucomyst (i'm going to research that) any other thoughts??? The problem with the diarrhea is that he has that when blocked too because it goes around it. And yup we had periodic vomitting, more reflux etc. when he is getting backed up. Do you have it under control now do you think? Any other suggestions???
 

Ratatosk

Administrator
Staff member
I do have a friend whose daughter is on regular maintenance dosages of miralax.

With DS his issues were primarily due to his surgery, but we have noticed with certain foods, he can get plugged up and have stomach issues. We limit the amount of nuts he has because we've found if he ates way too many peanuts in can cause a blockage.

there are also some people who used pancreacarb before the FDA required reapproval, which had bicarbonate in it and some have resorted to taking a bicarbonate supplement because they are so very pancreatic insufficient. Was it Rejane's daughter?...
 

LittleLab4CF

Super Moderator
For CFers afflicted with GI presentations, usually they have constipation. CF screws with the bowel, both in motility and fecal plasticity. A healthy bowel re-absorbs about 92% of the water passing into the bowel. The sticky, as opposed to slippery mucus membrane stiffens the bowel, reducing its pliability and therefore its ability to massage the feces up, over, down and out of the body. The mucus membrane can be seen as one layer of a tube, with nerves, blood vessels, and lymph ducts surrounding a muscular tube designed to massage and transport food/food waste through peristalsis, lined with the mucosa, which due to CF the mucus resembles a never drying rubber cement.
If the bowels aren’t moving things along at a normal pace, the CF errors won’t stop drawing water out. The sticky quality of intestinal mucus can’t be understated. Isolated fecal material gets stuck on the wall of the bowel, and the peristalsis fails, but not without a fight. This results in a bone dry, clay hard future fecal conglomerate that pulls the mucosa off the bowel wall, like your skin peels off a frozen pipe. Hence these bowel blockages fortunate to leave on their own resemble random clumps of hard clay pressed together with bright red tender mucosa defining the boundaries of each clump.
You are now officially constipated and when you finally do have a successful bowel movement, it can resemble a birth without the baby. Understanding the mechanisms for practical purposes describes the dilemma in hopefully actionable terms. First, 92% of how much water implies greater hydration will help. Added electrolytes and if the bowels start awash in water, some of that sticky mucus in the bowel gets more hydrated which can quantifiably improve bowel function. I am surprised I haven’t heard more people talk about Amitiza.
Amitiza uses a direct counter mechanism to keep water in the feces that would normally be sucked dry via CF. I take it with my daily meal, in the evening. It is prescription so talk to your doctor. Some may have taken the short course on Amitiza and in a particular dose and schedule, it is specific to women. Not! It is prescribed equally for men and women. The end result is keeping feces plastic presenting no difficulties rounding the corners, and generally responding properly to transport.
Oh Mirilax, not long before Mirilax hit the market I was prescribed colon prep, which I then measured the powder, found in Mirilax, along with way too much electrolyte, but for the same effect. Mirilax, (polyethylene glycol) bonds with water to make a bulk gel, also immune from being dried out by the bowel, adds plasticity, bulk and weight. And it slides over the sticky mucus, because it is slippery, and popularly understood to mitigate some of that mucosal gluing. There probably is a practical limit to the amount of Mirilax one can take, but my GI doctor set a practical limit of 6 dosages in 24 hours. The process of arriving at the correct dosage is through titration. Starting with a single dose and slowly increasing until a person feels they are regular. Amitiza can cut the dosage limit of Mirilax considerably.
Amitiza has a limit, not to be exceeded. Mirilax is the original “do no harm” solution. It remains inert and as long as it is taken with a proper amount of liquid, at some point it will work.
My situation mimics the worst CF presentation of constipation. My pancreatic pain is off the scale and narcotics have been the only useful analgesic for decades. Narcotics=constipation, and I have lived long enough to now have Parkinson’s disease which Parkinson’s=constipation and the controlling medication causes serious constipation for those who only have Parkinson’s to deal with. This brings up extreme measures. Magnesium is the next, in practical quantities, it is harmless. For somebody not taking magnesium already, 300mg to 900mg will usually get things moving. The higher the dose, the more you pay in the trade off of being in pain vs. getting relief. A regiment of 300-600mg is good for keeping normal and is in my daily routine. Last is controversial, bisacodyl sodium 5mg a stimulant laxative and prime fodder for laxative abuse. My GI doctor is flatly against its usage, especially on a daily basis. My GP who also is my pain management specialist feels it is necessary to counter the bowel paralysis from narcotics. I use it daily unless things are moving well, then I stop until I have to resume. I neither advocate nor dismiss bisacodyl sodium, but lay out an example including the controversy for each person to decide what an how to develop a regularity, including different complications. There is a formula embedded in all this from which is a routine I feel anybody with constipation issues can follow. This is one to be proactively managing avoiding really serious bouts of constipation that is in fact an acute GI problem that someday one might look up and realize some real harm has been done. Constipation can cause so much pain and discomfort, not to mention some unwanted toxicity, invitation to microbial imbalance so necessary for the oil soluble vitamins to be processed and absorbed. That balance and your yogurt are compatible with colon health, but remember, or log what works better, when. Colon health should be a self read and not burning up memory in posts. The minimum is to have a good probiotic daily, whether you take a capsule or eat Greek yogurt, upping probiotics with antibiotics to keep killing off healthy bacteria in the gut aids in that normal balance. Foods for bowel health is a topic for another forum.
 

LittleLab4CF

Super Moderator
As usual, I missed a big help for general CF health, especially GI health: WALKING!!!!!. Yeah, it is so obvious, but don't knock it until you've tried it. When my bowels have been primed and I am getting nothing but gas, which for some, is a relief in itself, I will either walk, vacuum the floors, needed or not exagerating the motion of my lower torso. This is good for bowel stimulation followed generally by some healthy motility. At the same time, the lungs get jiggled around, the bones sense their weekness and strengthen etc. For those who are beyond full body wieght walking, programs abound for pool walking, which I have also done. The buoyancy and fluid properties lower the impact, and moving water instead of air puts more work into building muscle strength, and though the mechanism of water walking reduces the painful impact of weight, if you involve your arms to create turbulence around your abdomen you add more stimulation. For those who any walking is out of the question, a hot tub, with well placed massage jets can address abdominal bloating, motility, etc.
 

Ratatosk

Administrator
Staff member
The bicarbonate helps the enzymes get to where they're supposed to go -- the small intestine -- so I believe the theory is that it keeps the stomach acid from breaking down the enzymes, too soon.

DS was on zantac as an infant, not for reflux, but to help the enzyme bead not get broken down too soon.
 

Aboveallislove

Super Moderator
Thanks Liza. All very helpful. I think we've gotten this batch cleared--he had liquid poop for 3 days with little grains in it (and no alternating b/w diarrhea and squirts of sticky stuff) and I cut back on Miralax yesterday and his first poop was getting back to a good stool. I just need to get the clear answer from drs now of how long I must be off milk-of-magnesia b/w doses and also try to tritrate the Miralax a tad higher regularly to keep from it building up. Thanks again everyone.
 
Top