Creon- DIOS, Anal Fissures, Heartburn, and gas

[lghsv]

I've been on Creon for as long as I can remember- it worked for years, and in the most recent 5 years, I've been on Creon Delayed Release 24,000 units. In the past two years, I've noticed an increase in bowel obstructions, gas, ridiculous heartburn and anal fissures. For the past two weeks, I've been having an inhuman amount of gas- it's absolutely ridiculous- along with severely painful anal fissures and heartburn every night that burns my throat and makes me feel like I'm going to throw up straight acid. I recently read that Zenpep helped for some people to relieve gas and a mounting amount of people saying Creon didn't work for them. Is this a common occurrence with Creon? Are there any notable differences between Zenpep and Creon?
Thank you!

[kenna2]

I would get checked by a GI doctor for GERD. It sounds a lot like what I went through before I was diagnosed with it. I had to have a Nissen Surgery to correct it and haven't had any real problems since.

[LittleLab4CF]

I'm currently taking Creon 36, the highest dosage available. Many CFers have epic gastric distress and the the cause is as elusive. When I was diagnosed with CF the least surprise was the degree to how much it impacted the GI tract. From an early age, when other kids were buying candy, I was getting a roll of chaulky Rolaids, because of the fruit flavor. By twelve I was taking my first lifetime prescription drug for IBS. The drug has changed but the reason for this is CF and the excess hydrogen ions in the gut and elsewhere. PPIs or Proton Pump Inhibitors are the current drug of choice for gastritis.

It's not difficult to grasp the biochemistry behind CF and high acid content in the stomach. CF is a disease known to fail at proper intercellular electrolyte balance, specifically chlorine, or chloride ion gates for balanced flow of the ion through the cell membrane. Chlorine is the most reactive of the elements, hungry for a single electron like no other. Hydrogen is the most abundant element and loves to play with chlorine which together making HCL our stomach acid. Hydrogen is just a single proton and single electron leaving H and CL both very happy as hydrochloric acid. PPIs keep the production of the inevitable hyperacidity down. I'm taking Dexilant, the monster of PPIs and I still don't think it's under control. Chronic hyperacidity contributes to ulcers up the esophagus and through the intestines. More than a few people with nothing more than bad gastritis have your exact symptoms.

Excess gas is typically the result of a food. My gut will begin to swell within minutes of consuming simple starches, sucrose and such long before any enzymes are taken. Gastritis can hit with the mere thought of food, the hunger response primes the GI tract for a meal. It can be agony, real agony with writhing in pain and the whole thing.

Many CFers are raw from the throat to the anal fissures. When asked to describe my pain I usually say it's like someone cutting open my gut, stuffing it with nasty spined cactus and closing it up. My native Wyoming has the types of nasty cactuses in my mind. Ping pong ball sized cactuses that have maybe 40 two inche long needles that spring up when disturbed by a passing animal or person, called jumping cactus for good reason. I've kicked up my fair share of them and they are nasty. The dry tips have a chemical irritant and barbs to make sure that it doesn't just slip off, insuring the seeds will be carried far away. I've actually seen coyotes and white tail deer frozen in pain from a handful of the cacti caught on the haunches. My graphic description is the closest I can come to how I can feel and imagine how you must feel right now.

Again in CF most people lose their gallbladder and if there is anything alive in the pancreas, it's not working right. If you need to describe your digestion it is not unlike having whirled food in a bag and the digestive enzymes, sodium bicarbonate and bile added, closed up and shaken. Gas will explode the strongest bag if you try it. We just suffer through the digestive process.

I have tried almost every enzyme capsules from the old fashioned immediate release Viocase to ZenPep and Creon's precursor, Pancracarb, that has the sodium bicarbonate buffer produced with enzymes in a healthy pancreas. The dieticians at the adult CF clinic I go to have been very helpful. More to the point my GI doctor prescribed the Creon 36 and it was the best thing for my tummy since I was diagnosed with CF. He's well informed and I had DIOS, unaware that it was the lack of enzymes causing it.

The addition of the sodium bicarbonate buffer could benefit you. I believe that another enzyme choice besides ZenPep also has sodium bicarbonate. It serves as a buffer, keeping the stomach acid in the stomach by neutralizing excess acid and stablizing the pH so gas production is limited and hopefully you can find reason for living with some relief.

For reasons I don't understand, we tend to tolerate a dysfunctional gut. The gut is telling. It's the repository for our emotions. We get an upset stomach from stress and it will get worse until that stress level comes down. The healthiest mental state won't be able to fix a CF gut but it will exaserbate the discomfort and dysfunction if you ignore your mental health. We also don't casually discuss how much feeling sick all the time wears on us. I don't see a whole lot of gut wrenching discussion, partly because it's just not worth it. Great advances in CF medicine don't include much for our broken digestion.

Through the Looking Glass, is time. Time or rather timing is what we need most for a well digested meal. The right time for the introduction of bile, enzymes and sodium bicarbonate is part of the autonomic nervous system. The gurgling we hear after looking over the menu or the smell and sound of steak fajitas going to another table is actually the small intestine sending several parastaltic spasms down, cleaning the remaining amount of food and mucus out in anticipation of a new meal. In my case the nerves in the mostly dead pancreas catch fire and I am so tired of it ruining my appetite.

I don't think your enzymes are at fault. If anything, you might need more enzymes especially if you are having DIOS. When I had my enzymes increased, DIOS was gone and for a while I felt great in relative terms. The whole process must be considered. The bad timing of enzymes, bile and food hinders digestion. The GERD and gastritis, the anal fissures and the raw throat sounds like too much stomach acid and lousy incomplete digestion. Maldigested food is hard on the tender lining of the large and small bowels. I've been to my GI doctor asking why poo burns so bad when I go to the bathroom. My expectation was also enzymes but I'd had a recent scope, upper and lower. He gave me a steroid cream for my burning anus and reassured me that the risk of doing damage with the enzymes was minimal. He said that five years on Creon 36 showed no damage and shouldn't.

To understand what is going in me I have studied the literature on my enzyme choice and acquired megacolon is the price of laxative abuse and enzyme supplement abuse. According to the doctor that bar is set very high when it comes to enzymes. The only thing I have done to help me with digestion is totally contrary to what we're told to do. I will take an extra enzyme capsule sometimes between meals. I know that it's the poor timing of food, location of this food in the gut and where my enzymes are working, or not. The burning hinie is more often maldigested food and probably stomach acid that doesn't ask for permission to flow.


Since you have both ends raw I would suggest that you try a PPI or a stronger one first and then play with your enzymes.

LL

[RalphMcDonald]

Both Creon and Zenpap contain Pancrelipase, so I think there is no significant difference between them. I would suggest seeing a gastroenterologist right away. Probably, you might have to change the version of Creon.

[Sonja35]

For me, I have to take a daily regimen of antacid like Nexium or Prilosec. I also have to take gas X on a regular basis. But to help with chronic constipation, I have to take Miralax to keep my bowels regular, even with enzymes. Hope that helps.