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

[Tisha]

I see this post comes up again in a time when I have new information.

From my own experience I would ask you what enzymes you are taking. With the old Pancrease (pancrelipase) I was doing fine, but the new Creon (pancreatine) caused havoc on my digestion. I have recently purchased Pertzye (out of own pocket and with great trouble to import it from the US, since it's not available in Europe yet) and I'm doing much better. I would advice anyone experiencing trouble in adjusting the enzymes to a proper dosage (meaning getting 1-2 "comfortable, well-formed poos a day") to try switching back to pancrelipase if possible.

Yesterday I attended a fantastic lecture by Dr. Tom O'Bryan (see www.theDr.com), a world-renowned expert on gluten intolerance. He pointed out that EVERYBODY experiences gut tissue damage from eating gluten. About 40-60% of the population have an actual gluten sensitivity, most often undiagnosed since on one side until recently there have not been any comprehensive blood tests available (the current celiac blood test only identifies 50% of the patients), and on the other hand people with gluten intolerance may be having "totally unrelated" symptoms, ranging from headaches to ADHD, elevated liver values, even epilepsy! Given that we (with CF) are constantly exposed to gut damage due to antibiotics, we are much more likely to develop a gluten intolerance.
I have felt so much better ever since switching over to no gluten and low grain diet! (with moderate carbs, mainly from potatoes and other safe starches, including some rice - and loads of vegetables and roughly 100 grams of fish/meat/foul/eggs per meal). Feeling good! And having a lot of fun cooking exciting and tasty stuff.

I think that everyone with CF should give a Gluten-free diet a fair chance. You might likely be happily surprised!

 

[KrazyKat2]

I wonder how closely they've looked at your pancreas? I know you said you have had an ultrasound(s) but not sure if they took a good look at your pancreas, as your symptoms to me, if we take away the constipation, which could just be DIOS complicated by other issues, sound very like a crook pancreas. Notoriously difficult to diagnose as the pain often radiates to other areas (the back), but causes weight loss, nausea, vomiting, diarreah, light stool colour etc.

I'd be getting it checked if i were you. I feel for you, not being able to work out what's going on must be very frustrating. Please keep us up to date.

 

[jono]

Hi Everyone,


Thanks for the renewed interest in my thread! I haven't posted here in a while but it seems like it's time for an update.


Unfortunately there has been no improvement in my symptoms since my last post. In fact, I have actually declined further.


I have been seeing the same GI for the past year now. We have tried various antibiotics (Metronidazole etc...), prokinetic agents (Domperidone, Erythromycin, Metoclopramide), fibre supplements, various laxatives (Bisacodyl, docusate), and removal of NSAIDs from my drug regime. However none of these have helped return my bowel motions back to normal.


I only had 2 scans last year. A gastric emptying study (that returned normal) and an MRI. The MRI did not show any signs of strictures, cancer, active colitis. However it did show "colonic mucosal thickening" and "some gas in the terminal ileum indicating ileocaecal valve dysfunction". I questioned my GI on these findings and was told it was nothing to be concerned about.


Over the past 6 months my whole digestive system has become increasingly sensitive. Now, whenever I have oral antibiotics, IV antibiotics, or even probiotics I get sever upper abdominal pain (tight, pressure, like someone has my stomach in a vice) from the moment I wake up to the moment I go to bed. Pain is not relieved by bowel movements at all. Lying down flat is the only thing I've found that helps. Pain normally reduces once I stop taking the antibiotic/probiotic but last time time it took weeks for the pain to subside.


Previously my gut never reacted to any antibiotics. Not even the strongest IV antibiotics could phase my stomach.


My GI has told me directly that he has given up on finding the cause of my gut issues. He believes all my issues are just Hypersensitivity / Hyperalgesia. His plan now is to just try and manage my pain with Antidepressants and Anticonvulsants. So far I have tried 3 different antidepressants (Mirtazapine, Amitriptyline, Desvenlafaxine). None of these have helped with my bowel symptoms, but all have given me horrible side effects to deal with on top of everything else. Next to try is Carbamazepine. I wonder what fun side effects it will bring me??


I can understand my gut's most recent sensitivity to antibiotics could be attributed to Hypersensativity / hyperalgesia. However I fail to understand how this diagnosis can explain all my other symptoms. Namely the soft, mushy, sticky, loose bowel movements that seem to coat my insides and are very difficult to pass (which ends up causing constipation). Plus the bloating and burping.


I was still using large doses of Movicol and limiting my food intake to try to manage my symptoms and keep myself 'comfortable'.


It got to a point late last year where I was only eating once day, continually losing weight, tired and hungry all the time, and still having trouble managing my pain and keeping my bowel clear. After talking to a dietitian, we decided to remove solid food from my diet and get all my calories from supplement drinks (lactose free, gluten free, low residue, nutritionally complete). This has help me keep my weight stable (I still haven't gained weight) and reduced my dependence on Movicol somewhat. The colour of my bowel movements improved but form and consistency has not improved. So I still require 4 Movicol a day to manage my pain and discomfort (i.e. still enough to cause diarrhea to flush out my bowel). I have been on the liquid diet for 3 months now.


As always, please feel free to post comments, questions, suggestions etc..

 

[Epona]

Hi Jono. I am very sorry to hear your symptoms have not improved. I have read much of this thread and from what I can gather, your symptoms may point towards an extreme case of gut dysbiosis (imbalance in the gut flora). Of course, you probably already know this or have assumed this. A huge problem for many in your situation is that mainstream GI docs are usually completely uneducated in the latest science of the gut microbiome, so that may be why they are unable to help you and have given up altogether. I have several questions for you that may help in trying to piece together what is wrong:

1) Have you ever heard of the GAPS (Gut and Psychology Syndrome) diet or the Specific Carbohydrate Diet (SCD)? If not, I suspect this is going to be a huge piece of the puzzle.
2) What happened in April 2012 (or just before) that may have caused this sudden onset of GI problems? New antibiotic? New pharmaceutical? Diet change? Physical/psychological trauma? Exposure to environmental toxins or pollution? ANYTHING strange or unusual that you can think of?
3) You mentioned you took an antibiotic for treatment of SIBO a while back with no effect. Did they actually do a TEST for SIBO (hydrogen breath test)? Was it positive?
4) Do you have any reflux issues and are you using any antacids/proton-pump inhibitors? Did you in the past and for how long?
5) What liquid supplements are you on and what are their ingredients?

I have many ideas but I do not want to make any suggestions or hypotheses until I know more information. I look forward to hearing from you.

 

[jono]

Hi Epona,

Thanks very much for the questions. I'll take all the help I can get at the moment! I am totally lost on what to do next. So any suggestions would be greatly appreciated.

To answer your questions:

1) I have heard of both of the diets but I haven't tried either of them. I have tired the FODMAPS diet though and didn't see any benefit. Before my gut problems my diet had been very stable for many years (besides the recent cut back on sugar - see question 2). The mainstays were meat (beef, chicken, lamb, fish), vegetables (peas, carrots, pumpkin, potato), and milk (and let's be honest - chocolate). I never really ate any grains/breads/pastas etc.. I switched from regular full cream milk to lactose free but it didn't make a difference.

2) In March 2012 I was in hospital receiving IV antibiotics for a Sinus Infection and a lung tuneup. After I came out of hospital I got on a bit of a health kick and made a number of changes to my diet and added in some suppliments.

I started taking the following supplements:
Vitamin C + Garlic + Horseradish supplement recommended to help with my sinuses (http://www.blackmores.com.au/products/super-strength-horseradish-garlic-and-c) I checked with my doctor before started this
omega 3 fish oil supplement
CF multivitamin (http://www.pulmomed.com.au/vitABDECK.html)


Lifestyle changes:
I started to cut out sugar from my diet (stopped drinking soft drink and eating chocolate)
I started back at the gym 3 times a week

Obviously when I started having gut issues which weren't going away I stopped taking all of the new supplements. I didn't see a change in my symptoms.

3)No I never had a hydrogen breath test. My CF doctor wasn't aware of SIBO ( I wasn't seeing a GI back then) and he just gave me the antibiotic because I asked to try it.

4)I don't have any reflux issues and I wasn't on any antacids/proton-pump inhibitors. I now take a PPI daily as that was one of the things that my doctor suggested to try for my gut issues. The PPI didn't help with my symptoms but I just kept taking it. I did have some heartburn when I first started taking the Vitamin C + Garlic + Horseradish supplement (which was very rare for me). However it subsided after a couple of days of taking it.

5)The liquid supplement drink I use it called Fortisip (http://www.nutricia.com.au/clinical/ecn/pdf/Fortisip.pdf)

I have always thought that my gut issues were always caused by either bacteria and/or some sort of malabsorption issue - even though my doctors have always put it down to DIOS, stress, IBS etc... Even if it wasn't the original cause of my issues, after years of diarrhea, barely eating, and a constant barrage of medications I'm pretty sure my gut flora is extremely messed up. Which is probably why I have become so sensitive to Antibiotics and Probiotics over the past few months.

 

[Epona]

More questions:
1)Have you ever been tested for C.difficile?
2) Did you take any probiotics after your April 2012 stay in the hospital or eat any fermented foods (yogurt/saurkraut/kimchi, etc.) to try to restore gut flora?
3) How long after the March 2012 hospital stay did you start to experience the new GI problems? How long had you been on a new diet until you started to feel these GI problems?
4) Is this an accurate characterization of your post-hospitalization diet? : meats, starchy veggies, pasteurized milk, the supplements you listed, cut out sodas and sugary chocolate. How often did you eat breads/sugar/pasta/pastries/junk food during this post-hospital time? How did your intake of carbs in general change after your hospitalization?
5) Are your poops pale/have no color in them? Are you still taking oxbile? Any other emulsifying agent?

I am beginning to see something taking shape here. Again, I would like to gather this info before I start making hypotheses/suggestions.

 

[jono]

Hi Epona,

1)Yes I have been tested for C.Diff and it came back negative

2)No, I didn't take any probiotics or fermented foods directly after the hospital admission. However, probiotics and increasing the fibre in my diet were the first two things the dietitian recommended when I started having gut symptoms

3)Went back and checked my records for the dates:

I finished my hospital admission / IV antibiotics on the 16th of March 2012

I first started having gut symptoms the 7th of April 2012

I don't have the exact date that I started taking the new supplements and made changes to my diet but it would have been only a couple of weeks before I started getting gut symptoms.


4) Meats, starchy veggies, pasteurized milk, and the supplements I listed would have made up 90% of my diet. I had stopped drinking soft drink completely at that time( So I was only drinking water and milk). I don't drink tea or coffee. I was still eating chocolate but I was in the process of reducing the amount I ate (I hadn't completely cut it out).


Other than the chocolate, the only junk food I ate was our once a week take out night (pizza, burgers, fish and chips, or Chinese food (rarely) This would be the only time during the week that I would have any bread type products. Other than that one meal a week I didn't eat any bread/grain/cereals. I didn't consume any pasta/pastries/other junk food during that time.


So in summary, the only change to my carb intake after my March 2012 hospitalization was the removal of soft drink and the reduction of chocolate in my diet. Everything else in my diet stayed the same as it was before the hospital admission.


5)No my stools aren't pale/gray/white. They are a yellow colour. Colour seems to be less yellow (and more towards normal brown) when drinking supplement drinks only (no solid food) or on antibiotics.


Stools become more yellow when I take probiotics or when I drink Lactulose. I only use Lactulose when I run out of Movicol (not very often).

I no longer take ox bile or any other emulsifying agent. I trialed the ox bile for about 3 weeks but didn't notice any improvement so I stopped taking it.


Hope these answers help (and not confuse things further).

 

[Epona]

Thanks Jono. Ok, I have a hypothesis for you, just as a thought experiment (not diagnosis, since I'm not a "doctor"). It would seem that your symptoms indicate a severe case of gut dysbiosis. What you have said in multiple post seems to indicate you do not have any structural or tissue damage to your GI tract or connecting organs, thankfully! This could mean that our job of returning your GI tract back to normal will be a lot easier. This dysbiosis seems to have been cause by the hospitalization followed by a period without probiotics or probiotic foods, then followed by a period of herbal supplements that are very hard on the gut flora (garlic, horseradish, vit. C). What might have happened is that all the flora down there was wiped out by abx, and then the beneficial bacteria was never reintroduced, so the harmful bacteria took over because those were the only ones that could survive the harsh conditions you created afterward (by accident). The infection got more and more established until it got to the point where it was too late for probiotic therapy without some sort of additional intervention. Here is where GAPS fits in.

What I recommend first of all is to read the "Gut and Psychology Syndrome" book by Natasha Campbell-McBride cover to cover. This is a CRITICAL book for all digestive disease. "Breaking the Vicious Cycle" by Elaine Gottschall may also be helpful to you, but the GAPS book is a bit more up to date. I read both. For gut dysbiosis of any sort, the GAPS diet is the most successful protocol that I know of. It is different than the FODMAPS diet, which you said didn't help you much. The GAPS diet is much more comprehensive and is focused on actually healing the tissue of the gut as well as correcting gut dysbiosis.

There are actually GAPS practitioners all over the world, possibly some in your area. They may be able to guide you through the process in the most effective and efficient way. But it's also possible to do it yourself, most people do (I did). Here's the website to find a practitioner and get more info on GAPS before you buy the book (but there is no substitute for reading the book): http://gaps.me/preview/?page_id=496

A first step you should consider (while reading the GAPS book and preparing to implement that diet) is to get off PPIs and any antacids at all, if they're not helping you symptom-wise. These are very bad drugs that cause serious imbalances in our GI tracts. They should never be used long term and it makes me crazy that docs are still prescribing them this way. It's idiotic. So as soon as you can, it would be wise for you to get off them. This will allow your stomach acid levels (which are critical for digestion and suppressing infection in the upper GI tract) to return to normal. Replacing them with a digestive bitters tincture (start with the milder bitters like dandelion, yellowdock, and burdock) which should be used 15 minutes before every time you eat anything. Bitters prepares your GI tract for the food coming its way by stimulating stomach acid production (a good thing), stimulating digestive juices, pancreatic enzymes, and bile release, and acting as a mild laxative in the lower GI tract. It is an herbal technology we humans have been using for hundreds of thousands of years so they are very safe and help regulate our digestive tracts in an evolutionarily-appropraite way. Yellowdock in particular would be beneficial as it has mildly laxative properties that do not set up any dependencies, structurally or biochemically, and will facilitate the beginning of a long process of removing the need for pharmaceutical laxatives. Bitter tinctures are put directly on the tongue (you must TASTE the bitterness in order for it to work, they work on the central nervous system directly) before meals, preferably two dropperfulls, but you should probably start slow (a few drops before each meal for the first few days) to make sure it's not going to cause you any pain in the beginning, then work your way up to a normal dose. You can find bitters at many natural food stores, or buy them online.

As you begin the GAPS diet and if/when your stools begin to improve, you'll have to experiment with how to remove the laxatives. It may be several weeks or months before you feel comfortable trying this. It's up to you. I've never been on laxatives, so I cannot make any recommendations in this regard. I do know, however, that many people who have successfully used to the GAPS diet to cure their digestive disorders have also been in the same situation as you in terms of laxative dependency, so going on forums or looking at the FAQs on the GAPS site may help you decide how to do this.

I also recommend visiting SCDlifestyle.com. It's a great website by two guys about your age who've cured themselves of their severe digestive disease via diet (the Specific Carbohydrate Diet, which is kinda like the old-school version of GAPS). They have really great tips, videos, and keep things light-hearted. Their blog posts are really informative and very helpful. Looking through their website may help you get encouraged enough to start the GAPS diet.

In the mean time, what might be helpful to add to your diet right now (other than the bitters) is coconut oil. It's full of lauric acid, which is a medium-chain triglyceride that can be digested without bile or pancreatic enzymes, and so is easily absorbable. In addition, it's antimicrobial, so it may help correct any gut dysbiosis, but in a very gentle way (not as powerful as what the GAPS diet will do). In order for you to get enough calories in while you're doing the GAPS intro diet, eating a lot of coconut oil will most likely be helpful. Add it to everything. Melt it and mix in with your supplement drinks if you can.

I am not going to suggest you start probiotics until you've begun to titrate off of the laxatives because the laxatives are causing such rapid movement of substances through your body that the probiotics are likely just going to be washed away down the pipe before they have a chance to take up residency. Dr. Natasha Campbell-McBride describes how best to start probiotic therapies during the GAPS diet.

I have a lot more to say and more ideas, but until you've begun the GAPS diet I will leave it at that. If you have any further questions, please contact me. You can also visit my website, where I talk more about this stuff more in-depth. www.cfnaturalhealth.weebly.com

Good luck!

 

[jono]

Thanks for all of your suggestions and information Epona. Really appreciate that you've taken the time to look at my problems.


I've already started reading your website - lots of interesting information there!


I'm going on holidays next weekend for a couple of weeks. So I won't start anything new until I come back. But the coconut oil and digestive bitters sound positive. So when I get back I will give them a go while I read the GAPS book.

 

[Epona]

Glad to be of help! Please let me know how it goes! Also, another thing that works very well for me in keeping me "regular" in the morning is a mug of chicory tea after I wake up. It usually helps me go within about 30 min, like magic. I add hemp milk and coconut oil to it plus a little stevia to sweeten. It's my morning non-coffee and I love it. I assume it's the bitter-creamy flavor that helps get things moving (works on the central nervous system, like bitters). Plus none of the negative effects of coffee.

Please stay in touch as I would love to help you trouble shoot as things come up as you transition to GAPS.

Be well.

 

[Simba15]

Jono: talk to a good GI doc about xifaxan. It is used to treat SIBO. your symptoms sound like what I had for two years before I ended up with full blown SIBO