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

[GlennyB]

Wow, am I glad to see this thread. Jono, we are in NZ. My five year old daughter suffers terribly from "extreme complicated DIOS". She also had a regime of weekly Klean prep (golytely) 2 litres, 20ml n- acetylcisteine 4x daily, 1/2 sachet movicol 3 x daily. She also has insulin dependent diabetes. In July 2012 she had the MACE procedure, so we were able to keep her large bowel clear while treating small bowel. It gave us better management, less pain, and quicker response time, though we were unable to lower her medications any, and her symptoms continued. We also started a long course of flagyl, which did seem to help, so we now cycle 2 weeks flagyl, 2 weeks gentamicin, 2 weeks probiotic.

in November 2012 out of pure desperation they tried her on an elemental diet of neocate advance. What a change. Only used Klean prep once since then.

However in the last two weeks we seem to be having absorbtion issues, gut transit time? Creon is not being broken down, the neocate is still sitting there, up to 12 hours post feed. I am bolus feeding her through an NG tube, 4 x per day. She will at times, when running her MACE run through green bile. Around her MACE site green bile can ooze out. She is on 1 creon per 4 gm fat. She has had endoscopy, etc, and there were no signs of fibrosing colonopathy. Also if she now eats any solids, they just come out in her stool exactly as they went it.

i found on the Internet dr freedman details, and passed them on to our paed. And I have seen them on here. She definately has a micro gall bladder. Crazy what the kids has dealt with in the last few years. Anyway, any further help, advice, contacts would be greatly appreciated.

 

[TreasureGoddess]

Your creon doses sound very low to me as well. My son's 12 yrs old and takes Creon 24,000 at rates of 6-8 pills for 6 small meals a day. Drink MORE liquids for sure. Amitiza is a life saver it makes a serious difference to my son (but it takes a couple of weeks to see the full effects). Is there a substitute pill for amitiza available? That plus daily miralax helps keep things moving for my son as well. The oil floating in the toilet usually means malabsporption, which we increase creon doses to counteract.

We've pretty much decided that the GI tract for my son just decides to run horribly slow from time to time. He will do a clean out, xray to verify totally clean (clear liquid coming out the back end even) and he'll plug back up within a day or two when the GI tract doesn't work well. Sometimes we have to back off the cleanout stuff (miralax to minimal doses) and just let the GI stuff relax and rest and just drink liquids for a couple of days. Sometimes my son's tract shuts down with too much work and stimulation and he was laying on the couch in pain for 8 months straight after test after test and cleanout after cleanout. He was hospitalized by a new CF center and they put him on iv's with clear liquid diet for 4 days and then slowly re-introduced foods and things go well now. Officially it was termed something like "slow emptying of the stomach" but realistically things just slow down and sometimes don't work well. Small meals, more enzymes and more liquids between the meals helps. Good luck.

 

[jono]

Very sorry to hear about what your daughter is going though GlennyB. I definitely know how horrible the GI side of CF can be and it sounds like your daughter has it to the extreme.

I am going to try what LittleLab has suggested - increase enzymes, try some ox bile tablets, wean myself of the large dose of Movicol, and try a smaller dose of Mirilax combined with a stimulant (caffeine and/or bisacodyl). I will also follow up with my doctor regarding retesting of liver / gallbladder, and possibly another (longer) dose of Flagyl.

I will post back on this thread when I have some results.

If slow gut transit time is an issue for your daughter, you might want to talk to your doctor about trying a gastroprokinetic drug like Metoclopramide which speeds up transit time. A number of CFs suffer from gastroparesis (which is slow empyting of the stomach) and this drug seems to help. My sister (who also has CF) suffers from slow empyting of the stomach and finds that Metoclopramide helps her. I have also tried Metoclopramide and saw an increase in how fast food moved though my system too. However it did not help much in my situation as food already passes though me fairly quickly.

You have probably already tried this, but I thought I would suggest it anyway. Hope it helps.

 

[jono]

Thanks for the feedback TreasureGoddess. I can relate to the clean out, x ray says I'm good to go, then I'm starting to back up again after a day or two.

As a couple of other people have suggested, I will be increasing my enzymes. I'm also currently trialling Metoclopramide to help with transit time / gastric emptying. While I have seen an increase in how fast food moves through, it hasn't helped much in my situation as food already passes though me fairly quickly.

 

[jono]

Hi everyone. For those who are interested here is an update on how I am going with my GI troubles:

Following the advice of little lab and others in this thread I have tried reducing the amount of Movicol I take and adding in a stimulant laxative (Bisacodyl) and caffeine. Unfortunately reducing the Movicol made my symptoms worse and the Bisacodyl seemed to have no real effect. I have also tried adding in ox bile as well as increasing my enzymes again with no luck. Also gave N-acetylcysteine (Pharmanac) a go as I read it can break down mucus in the gut. It didn't have any effect on my bowel but I did see a positive effect on my lungs.

I am now under the care of a GI specialist. I have had my LFT bloods done again and all my levels were fine (Bilirubin etc..). GI specialist is not exactly sure what is causing my problems or how to treat me. So we are just going through a list of options. As I can only get in to see the GI every 6 weeks progress is slow.

 

[LittleLab4CF]

Juno,
Thanks for the timely update. Recently I referred to your bowel conundrum in a post. A week ago I would have been genuinely surprised to hear nothing I suggested, helped. The post topic "colonoscopy" recently discussed was likely your motivation to update the community. If not you might scan the post.

I appreciate your feedback and though you were clear in your update, is there anything I suggested that was too costly in misery or pain that was not worth the attempt?

LL

 

[jono]

Hi Little Lab,

Everything you suggested was worth trying and definitely not too costly in misery or pain. I certainly don't regret giving any of your suggestions a go and I really appreciate that you took the time to read my post and comment in the first place.

I haven't read the "colonoscopy" thread but I'll go check it out now.

 

[MotherofCFBoy11yrs]

Hi jono, there is a German guy with CF who has had similar problems as you are having, and his solution is sodium bicarbonate: ttp://www.cysticus.de/english/fnutrition.htm. I found this site as I was looking at bicarbonate in CF which is interesting. I've ordered the Ventracid from a German online pharmacy just to see what it does (as prevention, my son does not have GI problems) and my son has started to complain that he has again taken too many enzymes! There is a recent mouse study from Sweden demonstrating the significance of bicarbonate in CF digestion but I can't find it now.

 

[jono]

Hi MotherofCFBoy11yrs,

Thanks for the suggestion. Ventracid does look like an interesting product and it's good to see that it's helped your son. Was your son on any antacids / PPIs (omeprazole etc..) before starting the Ventracid?

Also - What is the website for the German online pharmacy that you ordered the Ventracid from?

 

[MotherofCFBoy11yrs]

Hi Jono, I got the Ventracid from here: http://www.eu-versandapotheke.com/search/ventracid.html?row=0. Finding a pharmacy that would ship outside Germany wasn't easy, especially as I don't speak any German (Google Translate came in very handy!).

My son hasn't been on any antacids/PPIs - his digestion is good - but I've been reading up on bicarbonate because it seems very important, that's how I found the German site. I'm also very conscious that over time CF might start to cause gastrointestinal problems.

Ventracid is just bicarbonate and some curcumin, but I couldn't find anything similar on iHerb (or maybe I didn't know how to look). Also there are the pancreatic enzymes with bicarbonate back on the market, but I don't think we can get them here, nor how much bicarbonate they contain. I'm giving my son 2 Ventracid tablets per meal, but maybe I should give him more, the concentrations should be high: http://jem.rupress.org/content/209/7/1263.abstract. I'm also going to ask our local pharmacy if they could make us a bicarbonate tablet/capsule, it might work out cheaper.

 

[jono]

Thanks MotherofCFBoy11yrs. I'll order some Ventracid and see if it makes a difference for me.

 

[MotherofCFBoy11yrs]

Hi Jon, Ventracid will probably help, but your symptoms sound like there a more acute problem - I just reread your post. I recall seeing a thread with a similar question to yours, and the person came back later saying the problems had been caused by the gallbladder, but I can't find that thread now. One thing you could try is to put a short summary of your question here http://ecorn-cf.eu/index.php?id=29. The quality of the answers varies, but there are some knowledgeable people involved and at least you might get several doctors with CF experience looking at the issue.

Another thing you could do is to look at fairly a recent study relating to malabsorption in CF and ask for a consultation by email with one of the doctors. For example - this is not directly related, but anyway (my son's liver enzyme lab results have been high in the last six months and he has just started UDCA) - I found this study convincing: http://www.ncbi.nlm.nih.gov/pubmed/22670841 (full text is here http://www.medscape.com/viewarticle/767151). This center seems to have a serious long term approach and a lot of experience. A consultation with a doctor in Europe would probably be a lot cheaper than in the US (they might do it for free).

 

[jono]

Hi MotherofCFBoy11yrs,


Thanks again for your suggestions. I really appreciate it. I will definitely post my question on that website and see what feedback I get.


If you do find that thread of the person who posted the question like mine please let me know. The Gallbladder has always been high on my list of suspects. Unfortunately my GI specialist now believes all of my problems are merely caused by IBS and that I don't actually have constipation at all. Despite the numerous Xrays and CT scans I have had over the past 12 months that have independently confirmed sever constipation. Frustrated to say the least.

 

[MotherofCFBoy11yrs]

Hi Jon, I can see why you are frustrated. Adult CF is rare, that's why it would probably not help to find another GI specialist in Australia, at least yet. But I'm sure there are doctors who have a good idea of what could be going on, most likely in good clinics in countries where CF life expectancy has been high for a long time. That's why I'm suggesting you search through articles about CF malabsorption and see if you can find these people and then see if you can get in contact. I keep an eye on the latest CF articles on Google Scholar - just a few days ago there was an Italian group that published something about new ways of using radiology in diagnosing CF gastrointestinal disorders (I'm sure you'll find it).

Maybe you could ask James Littlewood if he could point you to the right people: http://www.cfmedicine.com/history/ because based on this site he must know a huge deal! You just need to find the right channel to approach him, I don't know if people answer emails coming out of the blue.

I've approached doctors and researchers a few times when I've read something really important and it has been life saving. My son has never been sick and I'm pretty confident we can keep it this way because of the way he is treated and because we can get the information we need. Neither of the clinics my son has attended (we've moved) is particularly good, so this has been the only way to look after him properly.

 

[TerriC]

I feel for you. My daughter is 24 and the last two years have been hell for her with her stomach issues. She drinks 1 liter of golytely each day and 4 litres when she does a clean out(usually every two weeks or so). We had her to the hospital several times and have found out that she has intussuseption which is rare in adults but some with CF do experience this. It can only be diagnosed while having a severe stomach ache by ultrasound. She does however also have DIOS and has stomach emptying problems as well. I think most of these issues stem from having surgery at 1 day old with Meconium Iileus. We have finally found a way to manage this problem at least to the point where she can sort of live normally. She was admitted to the hospital for 1 week and was cleaned out both by enema and golytely. She then did a liquid diet for one month and then slowly began eating again. She still does not eat huge meals and will often substitute an ensure when she starts to feel that she is filling up again. She still does golytely every day has really begun to recognize the signs her body is filling up. She weighs herself almost every day as her weight will fluctuate up to 7 lbs. when she is starting to back up. Once she sees she is starting to gain weight, she stops eating and cleans out. I know this was pretty long winded but it has been quite the ordeal over the last little while. I really hope this helps....

 

[jono]

Hi TerriC. Thanks for your post. Very sorry to hear about everything your daughter has been going through. Glad to hear she is finally starting to be able to manage her problem. Still sounds like very hard work though. I can certainly sympathize!

 

[rmotion]

It seems you have run the gauntlet of tests and modalities to treat your issues, I struggle and have struggled with many of the same.
Here are my 2cents worth of what has worked for me.
1. Liver massage ( having some scarring and inflammation with liver, i massage my liver and pancrease frequently, sometimes with an electric one, it seems to help and at least get the blood flow and such moving, if it gets into the deep part of the liver not sure.
2. I had miserable bowels for my entire life, once I found out about gluten sensitivity and went gluten free my bowel problems really improved. I see you tested for negative celiac but I think most CF"s have a gluten sensitivity, and unfortunately there is no test just process of elimination and trial and error.
look up gluten sensitivity or non celiac gluten sensitivity, or http://www.glutensolutions.com/dark-side-of-wheat.html
3. Having recurring bouts of C. Diff that is minimally helped by, flagyl, vanco or difficid, probiotics and saur kraut seems to help. One aggressive method is a probiotic enema. just saline and 100Billion range 2-3 times per week. Just be careful obviously.

 

[AH11201]

I see this is old post, but I'll throw my 2 cents in anyway. I second motion's idea about cutting out gluten. I would also look at your diet carefully and see what other foods could be irritating to your gut. Personally I'm a big advocate of a paleo diet, but even within that you may have to experiment with cutting out things like nuts, dairy, FODMAPs, etc. Also, try gut-friendly foods like bone broth, fermented probiotic foods, healthy fats (e.g. grass fed butter, pastured egg yolks) and really nutrient dense meats (e.g. pasture raised, grass fed, offal if you can handle it). I'm not saying this will cure severe issues or that diet is even the main culprit, but I do think it could at least help ease your symptoms.

 

[vberl]

Hi! My treatment includes not only Esomeprzol but also CINITAPRIDE. The combination makes all the other items work well.
Hope it helps!

 

[musclemania70]

Sorry you're having so much trouble and it doesn't seem to be resolving.
This may sound very simple and not enough for your extensive problems...but I'll say it anyway.
I started having stomach issues last fall-constant CHURNING pain in my stomach. I adjusted my Creon (on my own) which helped a little bit but still had mushy BM and stomach aches.
I started eating a ton of yogurt (plain, organic) for breakfast and lunch. It significantly helped. NOT probiotic pills. Just PLAIN yogurt. No sugar flavored junk. PLAIN YOGURT.
I don't know if it will help you but maybe its worth a try.