Advice / Suggestions please - Chronic GI Symptoms - Docs don't know what's going on

[jono]

Hi Everyone,

My name is Jon and I am a 29 y.o. pwcf from Australia. Since April 2012 have been experiencing chronic GI symptoms (sticky, soft, mustard/yellow stools 8+ times a day and pain in upper abdomen). Initial xray came back with constipation. So my CF specialist initially put it down to plain old DIOS. However even after repeated clean outs with liters of colonoscopy prep (confirmed clean by x ray) I always start to back up within 24 hours and no improvement in my stool.

After having numerous tests and trying many different treatments (most of which were at my request), my doctor has admitted he has no clue as to what is going on. I've even been to see the hospitals GI team and they were no help. Has anyone has had similar symptoms or been in a similar situation? What did you do to help? I've listed below ( in the next post) all of the investigations performed and all of the treatments I have tried with no luck.

My Current treatment regime (for GI issues):
8 Movicol (same as Mirilax) a day - 4 morning / 4 evening (basically I try to induce watery diarrhea every day - otherwise I can feel things getting "stuck").
Only eat twice a day (2 meals no snacks)
Once a week do a clean out with 3+ liters of colonoscopy prep

I've suggested Amitiza to my doctors but it's not available in Australia. I've also suggested changing my enzyme brand but the only brand of enzymes available in Australia is Creon.

I haven't had a solid bowel movement in 9 months (even without laxatives) and my quality of life is the worst it's ever been.

If anyone has had similar symptoms / been in a similar situation what did you do to help? I feel like there is some sort of underlying malabsorption problem that is causing the stool change and DIOS / constipation is just a secondary issue.

Really appreciate any suggestions or advice anyone has.

Thanks!

 

[jono]

Tests Performed

• Multiple Abdomen Xrays – showed reoccurring constipation
• Abdomen CT Scan - showed servery constipated
• Ultrasound – no abnormalities
• Blood tests (infection, celiac, liver, thyroid, Chrons, etc..) - no abnormalities
• Stool samples – no parasites, blood, infection etc
• 3 day fecal fat test – 9 grams/fat per day (slightly high, normal 7 or less however result was deemed normal due to me having diarrhea from the laxatives
• Colonoscopy – nothing was found
• Endoscopy – nothing was found
• Biopsies performed during Colonoscopy and Endoscopy – nothing was found

Treatments Tried

• Increase of enzymes (up to 4 x usual dose) – no improvement
• Proton Pump Inhibitor (varying dosage)- no improvement
• High Fibre Diet – no improvement
• FODMAP diet – stools became looser
• Probiotics (various strains) - no improvement
• Iberogast oral liquid – no improvement
• Mirtazapine (antidepressant – for IBS) – no improvement
• Prucalopride (for impaired motility – not available in the US) - no change but did experience bad side effects) - no improvement
• Metronidazole (for SIBO) – no improvement
• Metoclopramide (for impaired motility) – no improvement

Symptoms

• Extremely soft, sticky, abnormally formed stools (very messy and difficult to clean up after)
• Grease floating on top of water (2/3 of the time)
• Up to 10 (or more) bowel movements a day (even when only eating one full meal a day)
• Feeling of incomplete evacuation (like something is stuck)
• Bloating and feeling uncomfortable after meals
• Severe cramping (all over) and pain (upper abdomen) when blocked up / constipated (even when having loose stools and moving bowels many times a day)
• Tiredness
• Lost 13 kgs (28 1/2 pounds) since April

 

[Aboveallislove]

It doesn't look like they've treated you for a bacterial overgrowth? Have they tried Flagyl/metronidazole? There are so many bacteria in your stool, they can't test for everyone and thus even if the stool samples came back without parasite, etc., there could be a bacterial overgrowth. Our son, 3.5, had either DIOS or constipation and was hospitialized but after the clean out it kept repeating of liquid stools, pain, "draino" sounding stomach, etc. Flagyl took care of lots of issues and then we needed to do lots of probiotics DAILY and Miralax, etc. Flagyl's nasty but if a 3 year old can do it, and given your pain, it would be worth the try. Our GI did it b/c all other tests were negative and symptoms were consistent with bacterial overgrowth even though after it worked it became clear they had no idea.

 

[Aboveallislove]

I was just going to suggest an acid reflux med when i re-read and saw the proton pump inhibitor. I googled to see what it was and then saw that writhdrawl from it can lead to severe rebound acid secretion. Are you still on it? If not, could that be causing some of the problems, i.e., enzymes not working b/c of all the acid? And maybe along with a bacterial overgrowth?

 

[Printer]

I have been where you are. I had to increase my Creon24 to 10-12 with every meal or snack. I would suggest that you increase youe Creon (2 at a time) until you stabilize.

Bill

 

[jono]

Thanks for the suggestions Aboveallislove. I did suggest bacteria overgrowth to my doctor. He looked at me as if I was crazy and said he had never heard of it let alone CFs being treated for it. Reluctantly he gave me a 7 day trial of Flagyl (at my request). Unfortunately I didn't see any improvement on it. Perhaps I needed a longer course. How long was your son on it before he started to feel better?


I'm still on the Proton Pump Inhibitor (omeprazole) so i don't think that will be causing any issues.

 

[jono]

Thanks for the advice Bill.

I did increase my enzymes (Creon 25 000 lipase - strengths are a little different in Australia) one a week. Initially I was on 2-3 enzymes with a meal. I went up to 8 -9 with no difference. It was suggested by my clinic nurse that I might have to go up to Creon 40 000 but I would need to do so while admitted (under hospital supervision). However my CF specialist didn't like me being on even 8 a day and told me to go back down to 3 or 4 a meal.

When I started experiencing all of these issues, my first instinct was "my enzymes aren't working". So I will trial increasing my enzymes again and see how I go.

 

[Printer]

Tell your CF Specialist to Google Steven D. Freedman, MD, PhD. Then perhaps he would contact him in your behalf. He can fill him in on bacterial overgrowth as well.

Bill

 

[Aboveallislove]

I believe it was a 7 day course (no more than 10) and I saw improvement within 3 days. That's weird though re the bacterial overgrowth b/c that is fairly common I think with CFers given the high level of antibiotics, but if the Flagyl didn't do it, then I would think it wasn't that. I would suggest continuing on the probiotics too--many CFers do that as par for the course. Sorry I can't think of anything else. I guess I'd also suggest trying to get a change in enzymes if there is any way to make that possibly work. . . augh. . . wish I had an answer . . . I know how hard it was when we were in the unknown terroritory!

 

[NoelA]

Your stools are yellow? Clay-like? Have they checked you bilirubin levels? Sounds like a gallbladder obstruction. Have you experienced any changes in the color of your urine?

 

[piggylu]

Hi, Have they done an actual Gall Bladder UltraSound? This happened to me, and they kept chalking it up to constipation and finally after 10 months of this, it ended up that my gallbladder was making me so sick.

 

[jono]

Thanks for the tip Bill. I'll definitely tell my specialist about Steven D. Freedman, MD, PhD. Also, can I ask if your doctors know how many enzymes you are taking with each meal? Are they ok with you taking so many? Are they worried about[FONT=Arial, Helvetica, sans-serif] [/FONT]fibrosing colonopathy?

 

[jono]

Hi NoelAand Piggylu.


Thanks for the gallbladder suggestions. I have had a gallbladder ultrasound. It didn't show any gallstones or blockages or wall thickening The only noticeable characteristic was that my gallbladder was of normal size. Typically most CF's have a much smaller than normal gallbladder.


I believe I have had my bilirubin checked and they were normal but I will have to check as I'm not 100% sure. I haven't noticed a change in my urine colour and my stools are more of a mustard colour than pale / clay like. Sorry if that's TMI.

 

[jono]

Thanks for replying Aboveallislove.
It is terribly frustrating not knowing what is going wrong with my body and how to fix it. I'm not going to give up though and I'll definitely post back on this forum when i find a treatment that helps. Hopefully that will help others in the same boat as me.

 

[LittleLab4CF]

Everything suggested in the preceding posts are from people who have consistently given valuable and measured responses. Chances are good if you haven't a dedicated CF GI doc, you need one badly. Even at that I read your list of trials and tortures and don't need to look anything up since I have tried or done them over and over again. I do know the problem and it seems nearly unique to CF. Extreme bowel habits suck!

I have gone the route of Amitiza and if anything it might make your problem worse. Although by all measures it directly counters the common CF issue of salty thick mucus in the bowel, the net result is keeping food moist in the bowel. If you were constipated with clay hard stools Amitiza could be a life saver but nausea from Amitiza for me at least wasn't worth it. I am far from typical so maybe it could help. One of the last 2 meds you listed to treat your problem wasn't available in the U.S. and my doctor worked through a Canadian associate to get it sent from Canada. Amitiza should be possible to import through your doctor.

The past 3 years I have been on a similar path to yours. Mirilax is not like Movicol for openers. It is overloaded w/ electrolytes that are wretched in effect. A better comparison would be your colon prep which to date I know nobody who actually feels better after taking. Consider trading Mirilax for Movicol and at that begin with a half dose nightly w/16oz of liquid. I take bisacodyl sodium 5mg at night and the caveat is my GI doc says don't and my GP says do. This is a consistant stimulant that hasn't failed me, added to that my daily caffeine fix, the real stimulant is my morning mocha and I really recommend this one. My sticky irritating stool came close to driving over the edge 6 months ago. Like you it was like passing liquid nails by more than one metric. I couldn't clean up after a bowel movement without wet wipes and imagined it virtually glued to my insides. Something had to change and keeping careful notes on anything and everything, I eliminated Amitiza and felt some better with no changes otherwise. After some testing I was found to have viral colitis. Excepting driving me crazy I was "back to normal" by the time I had a colonoscopy except I wasn't back to normal. I increased my Creon with improvement. What probably skewed the colonoscopy was Flagyl and Levoquin infusion for a week since I had gone septic. I repeated the infusion about three months ago as well.

The short version is this, your enzymes are off. Although at your levels of Creon you have been on, if you aren't diabetic you probably aren't to Printer's total PI and at worst should be at about half his need. Creon won't digest your fats, that takes bile. As stated in a post, your liver and/or gall bladder generally cause the yellowish stool. No bile can produce a white chaulky stool, just the right amount at the right time yields a brown formed stool and spurts of bile at the wrong time or gobs of bile discharged from the liver with or without an intact gall bladder will give you a yellow/green stool. That floating oil indicates a possible problem with your diet. Many CFers can't ingest fatty foods or get nauseas trying so for many of us there isn't much fat in our diets. If you can't digest fat try eating foods lower in fat. You aren't really constipated most likely but those Movicols are adding a ridiculous amount of fecal volume daily. More here is not necessarily good. I went from a double dose of daily Mirilax to half a dose every other day. Constipation with CF is so touchy in my experience that small timely changes in your daily bowel regement, changing one thing at a time and observing any change for several days and either increasing or decreasing that one thing until it is optimal. Understand why and how each thing you try or use works. Take Movicol, it contains hypertonic electrolytes and polyethylene glycol or polypropylene glycol. Why? How does it help? What could make it more effective or less? Hypertonic electrolytes draw water from the gut and assures a soft stool. Dissolve Movicol in a big glass of water and pop it in the fridge and you get a glass full of a solid gel. Outside of a losing battle attempting to hydrate your body because you are mainlining salt wth all the Movicol plus all the liquid gets bound in a gel to amass a volume of material that is overloading the capacity of your gut. In other words you are full of it. So how does bulking stool with a soluble gel help? Gravity is assumed to get things going and even if you just used PEG like Mirilax w/o the electrolytes the gel is intermixed with food adding bulk, water to keep the stool soft and pliant for nature to do its thing. Too much cr*p is too much and you will forever be full until you cut back on bulking agents.

Some semblance of a routine can help a lot. Although many factors demanded my CF father live by the clock, it helped other things to go regularly. I have a light regular schedule where I go for a walk the same time each day and try to go several scheduled times each day.

Last but not least involves malnutrition. Consider AquaDEK vitamins as your main vitamin as it fills in nicely where CFers are most often deficient. Add calcium and magnesium, additional D3 @ 10,000IU, a good probiotic bacteria culture, and finally a probiotic yeast, saccharomyces bolardii noted to deal with c. Diff. If fats are consumed in your daily diet consider taking ox bile with that meal.

I would recommend you stop Movicol, switch to a daily half dose of Mirilax, add the bisicodyl, keep well hydrated, exercise by walking to jiggle the gut. Throw in a daily caffene drink like a mocha and repopulate your gut with good probiotics. This is all common sense stuff but don't just take something because you have been for years or whatever without fully understanding the purpose it serves. You'll be full of sticky stuff until you prune down the huge fecal volume produced by your regiment w/Movicol. Dr. Freedman is the go to guy for pancreatic/abdominal CF issues. I recommend your doctor and he talk.
LL

 

[Printer]

To answer your question regarding my Doctor (Steve Freedman) and I worked together increasing enzymes using a plan as the one that I outlined to you. All of my Doctors are aware of my dose of Creon. We are also aware of fibrosing colonopathy. I have a colonoscopy every three years to check or to find any issues

By the way, Little Lab is a genius, listen to what he says. We are both Steve Freedman patients and alumni

Bill.

 

[jono]

Hi LittleLab,

Thank you very much for your detailed and thoughtful response. Very much appreciated.

I couldn't agree more regarding getting off the Movicol. I do want to clarify though that before all of my GI issues began I was not on any sort of daily laxative and had a regular routine of 1 bowel movement a day after breakfast.

About 2 months after the soft sticky stool began I started having sever cramping pain / pressure in my abdomen. I asked my doctor for an abdo xray which showed that I was full of stool. At this point high dose Movicol (6 - 8 a day for 3 days) was started to clear out my bowel, then 2 Movicol / day as maintenance. The cramping subsided with the Movicol. However when I reduced the dose I could feel myself starting to get backed up again. So my maintenance dose went up to 4 Movicol / day. Then I needed 6 a day. Now I am on 8 a day. 8 Movicol a day (combined with restricted food intake) gives me a completely watery stool / diarrhea (nothing formed at all). Besides the fact that I go to the bathroom 10+ times a day, this is the only way that I have found to feel comfortable. Free of any cramping pain and pressure, the feeling of being backed up or like something is 'stuck' inside my intestines.

Obviously this is no way to live and I need to find another way to help clear my bowel. As you stated, using Movicol to increase the bulk and soften the stool is not helping my situation. My stool is already soft, why would I need to make it softer? The only reason why 8 Movicol is working at the moment is that it's drawing in so much water from my bowel it's turning my fecal matter to water.

I have an appointment with a GI in late March who is supposed to have a much better understanding of CF than the GI's I've seen previously. Why I wasn't referred to him in the first place I do not know. Until then I will go with your suggestion of swapping Movicol with a low dose of Mirilax combined with Bisacodyl and caffeine. As well as increasing my enzymes. I'm not currently a coffee drinker so I will be interested to see what effect it has.

Since this issue has gone unresolved and my doctors seem to have run out of ideas, I have become more proactive in my own efforts to find a solution. I keep a diary of symptoms, food, medications, bowel motions etc. I have also spent a lot of time researching about how digestion works, how CF affects the GI tack, what condition my symptoms could indicate, and how various medications I take work (However I was not aware of the differences between Mirilax and Movicol I just knew they were both based on polyethylene glycol). That's how I found this forum which has been one of the best sources of information for CF on the net. Before starting my own thread, I had read many of the other of the abdomen pain, constipation, DIOS, and gallbladder threads on this forum. That's how I found out about bacteria overgrowth of the small intestine and Amitiza for example.

Regarding possible gallbladder/ liver issues: I do have a fair amount of fat in my diet. I have always been able to handle fats (with the appropriate amount of enzymes) and my cf center (both children and adults) has encouraged me to eat as much fat as possible. My diet has been very stable for the past 5+ years, so to see floating oil without any change in my diet is very unusual. I had also previously read that yellow coloured stools are an indicator of lack of bile / gallbladder issues.

My CT scan and ultrasound did not show any abnormalities with the gallbladder and only a small amount of fatty deposits on my liver (which I was told was typical for someone with CF). Also my LFTs were within normal range (as far as I know). However I did ask my doctor for a gallbladder function (HIDA) scan. I had read that ct scans / ultrasounds don't always pick up minute blockages and that a HIDA scan would be a more accurate assessment of how well my gallbladder is working. My doctor decided to do a 3 day fecal fat test first and if it was high, he would order a HIDA scan. My fecal fat test was slightly high (not as high as I thought it would be) and my doctor put the slightly high result down to amount of laxative I was taking (at the time it was 4 a day). A HIDA scan was never ordered.

I still definitely think that either lack of enough bile or a reduction in the quality of the bile my liver/gallbladder is producing is a probable cause of my current bowel issues.

Before I end this already very long post (thanks for reading this far) I do have a few questions for you:


1. Just to confirm - your sticky irritating stool was improved by - stopping Amitiza and reducing Mirilax, treating viral Colitius, and increasing your enzymes?


2. Have you used or know of anyone who has used ox bile successfully to help fat digestive problems?


3. How does ox bile compare to ursodeoxycholic acid which I have read is a secondary bile acid that is used to treat liver disease in CF?


4. I have read that bile acid malabsorption is a issue in CF. One article I read suggested that it could be a cause of DIOS. However I have not read about any person with CF being treated for it. Should I be considering bile acid malabsorption as a contributing factor to my current situation?

 

[Printer]

Juno:

If you wish to give me your email address, I will send you info on fibrosing colonopathy. It is a rare occurance in children and even more rare in adults.

Bill

 

[jono]

Thanks Bill. I've sent you a PM with my email address.

 

[LittleLab4CF]

Juno, it looks like you are well armed to proceed. Read over the posts again including mine. A few things mentioned weren't in your summary. Repopulate your gut with probiotic bacteria and the probiotic yeast I listed. Yeasts and bacteria balance each other in the gut. A daily bacterial probiotic capsule and maybe 2 yeasties a week for openers. Molds like Candida can overgrow the gut if all the bacteria and yeasts are dead and so forth.

I do recommend switching over to Mirilax at a low consistent half dose for starters and don't forget 16oz of liquid.

If you hate coffee chose Mountain Doo or whatever caffinated drink you choose. Coffee and chocolate have much more than caffeine to help the gut but I have substituted other caffeinated beverages w/o problems.

Don't forget that daily exercise and at least twice daily attempt a BM. Try going when you otherwise feel like dying from abdominal pain. Offer that crap an out.

I take ox bile w/ice cream, nuts and meats. Not only are my room clearing farts tamed but the not so funny gas pains are mostly eliminated. Bile works a little like olive oil does for pre-treating the grime on yor hands after you have worked on a car engine. Bile breaks fat down so lipase etc. can digest them.

Consuming fats works for your benefit only if you can digest them. Ox bile will darken your stool but you should be pretty much free from fecal fat if you get the timing and quantity right. A little too much bile is harmless so lean a little heavy if you want to. As far as your third question I don't know the answer and will study it, thanks.

I probably had C. Diff when I was diagnosed w/colitis and viral colitis is all that remained by the time of my colonoscopy. Sorry for the confusion so I suggest a course of Flagyl, an antibiotic. Then be sure to grow that probiotic culture back as you always should after taking antibiotics. Those probiotics in your gut digest a lot of food which you absorb in through the colon walls. No probiotic garden in your gut is a bad thing. Also don't forget the AquDEK vitamin. I hope this helps. Feel free to pm anytime.

LL