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Posted 4/12/2013 5:28 PM (GMT 0)
The purpose of this note is to ask if the following sounds familiar and to see if anyone has any recommendations.

In the last bit I have been diagnosed with SIBO, carbohydrate malabsorption, slow small bowel motility and IBS. I do not think the doc knows,what is cause and what are symptoms. Is the carbohydrate malabsorption a symptom of SIBO, or the other way around? Is the slow motility causing the SIBO? But bottom line I have not been doing very well compared to how I was doing 6 months to a year ago.

I seem to have this pattern going on. I feel good for a couple of days, then I get what could almost be called an attack. It starts with very bad cramping and loud gurgling . As the d explodes out, I get a brutal burning sensation in the rectum/anus that can be bad enough where I have considered going to the hospital. This will last for 3 or 4 hours. I am a wreck after that. I feel like I have been in a street fight and lost, badly.

My guts are a bit sore for a couple of days after that but this feels like residual from the "attack" not new pain. Then I am good for a bit, then the cycle starts again.

I eat the same stuff and take the same meds and supplements everyday, so I know it is not something like I am a celiac or something like that.

I was reading about the waves created by the guts to support digestion and it almost feels like something is wrong there. I had food poisoning many years ago and although I am not vomiting, it kind of reminds me of that fun fest.

In any case, has anyone experienced or heard of anything like this? Thoughts? Recommendations?

Thanks


Dave
Posted 4/12/2013 5:59 PM (GMT 0)
Actually, as far as diet goes, we can devolope new intolerances especially to foods we consume very often or in large amounts. For instance when I got my food panel results and had to cut out yeast and wheat I switched to almond flour and almond butter for my bread recipes. After 6-8months of consuming almonds in some form almost daily I developed a severe intolerance to almonds. The last time I ate a single almond I was running to the bathroom atleast 10 times in the first hour with burning, watery acid D (I already new I had developed an intolerance but I was shelling the ones from our tree for my husband and couldn't resist:( what harm could one little almond do??? right). Fish oil too, I was taking it for a couple of years but have a hard time doing anything ritually so it as not daily but rather once or twice a week, I started taking them religiously when I made all of my diet changes and now I can't eat any fish even salmon or whitefish. Now I am trying to figure out what else is bothering me, I think it is onion, but possibly garlic, or maybe both I use them together most times so it is hard to pinpoint. Anyhow, a good rotation diet (4days) is recommended to help avoid developing intolerances and inflammation in general. This is a challenge for sure but it is possible. I also spoke to a woman at the whole foods store who had the same thing happen to her son, he had the food panel done and changed his diet and got well. He started consuming oats regularly avoiding wheat and corn and developed an intolerance to oats, so definitely look at your diet.
Posted 4/12/2013 6:19 PM (GMT 0)
that is very interesting.
I will do as suggested, thanks
d
Posted 4/12/2013 6:27 PM (GMT 0)
Also, I don't develop an intolerance to probiotics but I do find that they stop working as well when I take the same one for a period of time, I find it is beneficial to switch brands and strains on a regular basis so they do not stop working for me. And I am not very familiar with SIBO but do you like artichokes? I picked my first two the other day and had them for lunch, the next day I noticed some positive benefits with my BM's. That was the only thing I had done differently so I googled "artichokes and crohns" and it turns out artichokes do have a positive effect on crohns and is actually being studied. The reason they are believed to be of benefit is they feed the good bacteria, so if you like them you might want to add those to your arsenal of foods. If you don't or they are not in season in your area I saw that they also sell supplements containing artichoke extract, might be worth a shot.
Posted 4/12/2013 7:11 PM (GMT 0)
I take SCD yogurt a couple of times per day and I have just started to take s. bulardii. I have been taking the yogurt daily for the last 3 years and it is a very very strong probiotic. It is an important part of my daily diet. Like other SCders I make "icecream" out of it and love it. I would hate to give it up.

SCD says to take only 4 probiotics in yogurt or supplement and other than that fermented foods.

Are you saying you think I should drop the yogurt?

I will look for artichokes
Posted 4/12/2013 7:51 PM (GMT 0)
Are you taking any digestive enzymes to support carb digestion. It may be that your inability to digest carbs is causing the SIBO? Do you have an integrative MD who can guide you on this - that's where I'd turn I suppose. Good luck, it's bad enough dealing with one of these issues.
Posted 4/12/2013 8:37 PM (GMT 0)
Did your recent symptoms start after starting the S. boullardii? I heard it on Dr oz that it was great to take for rebuilding the Intestine and decreasing permeability(which we need) but I looked it up before I bought it luckily, and it is actually a nutritional yeast, not a pro-biotic(good bacteria). So for my yeast allergy I assumed I should stay away from it. The last thing I need to do is fill my body with more yeast even if it is supposed to be good. No I wouldn't drop the yogurt at all, I don't remember the SCD listing pro biotics to take, other than I think it was SCD that said not to take acidopholis? I gave up SCD when I found out my intolerant foods and it wasn't necessary for me to be as restrictive as SCD, I think SCD is great and helps a lot of people, and I admire your determination on being able to stick with it, but I believe it has it's drawbacks, and it isn't the Bible lol so going against it a lil bit as far as probiotics go shouldn't be so detrimental:) I am saying that if I only eat the yogurt or stick with one supplement with only a couple strains then it seems to lose benefits for me, but if I alternate strains or brands then it seems to work better for me. The yogourmet starter I have has L. bulgaris, S.thermophilus and L.acidophilus, while the greek yogurt has those plus Bifido lactis, Lrhamnosis, and L casei. The capsules that I currently have in the fridge contain 66billion organisms per capsule and those are: B.lactis, L.acidophilus, B.longum, B.bifidum L.casei, L.plantarum, kyo-Dophilus(L.gasseri,B.bifidum,and B.longum combination) L.salivarius, L.rhamnosis, L.bulgaricus, Lactospore Lactobacillus sporogenes, and 100mgscFOS. Also I use Primadophilus Childrens powder which is 3billionCFU's per tsp. and it contains L.rhamnosus, Lcasei, L.acidophilus, B.infantis, B.bifidum,B.breve, and B longum. There is another one that I generally use with these but I buy it when it is buy one get one free bc it is $30 for each bottle of I think 30 capsules.
Different bacteria work in Diff ways, so if you have SIBO is that an overgrowth of good or bad bacteria? I imagine since we should naturally have all of the millions of bacteria and many different strains then limiting ourselves to 4 strains would not be the best plan. Also, not sure if you are aware but the "B" probiotics work in the Big intestine lol(the colon) and the "L." is supposed to work in the little intestine, at least that is what some lady on PBS said:0
The supplements I take are based on a list of beneficials that I accumulated a few years ago based on different things that they were supposed to do, so maybe changing things up a bit may be of benefit.
As I have said before, SCD is fantastic for many people but you have to remember also that it was made A LONG, LONG time ago. It was originally a diet for celiacs and it worked for them, I believe it was a cure, but when it was discovered that Gluten caused Celiacs this diet was abandoned because it is not necessary for them to eliminate ALL of the other foods. Same goes for crohns, there are some illegal things on there that I can tolerate perfectly fine, as well as some legal foods that I cannot tolerate at all. So we should all stick with what works for us and change it up a bit if it doesn't.
Posted 4/13/2013 12:15 PM (GMT 0)
skofbengsk - When you described having the same symptoms as me I thought your recommendation would have a high chance to be helpful for my current situation. However as I think about it, I have been basically eating the same few things daily. Is there any way for a food (chicken as an example) to be fine today and really bad for a person another day, then fine the next? Unless that happens I can not see how it is a food intolerance. I am doing low carbohydrate, low fod map and SCD, so have stopped garlic and onion, honey...
However, even with the above, based on your recommendation, I have added back a bunch of low fod map/carb veg. (yesterday, i made a grilled salsa that was great and included mixed peppers, tomatoes and cilantro). I bought some other stuff and will cook and add a variety of veg today.

It was not the S. boullardii that caused my situation. I started this as a treatment after the symptoms. I keep reading how good it is for d, and I bought a couple of bottles so I will keep taking it, but I am not sure it will address the "attacks" i am getting.

SCD is about starving the bad bugs and replacing them with good bugs. That is why the requirement for fanatical compliance. The bad bugs need very little to thrive. That is also why the number of legal bugs is so limited. It is not about celiac or gluten. The diet has proven to be one of or perhaps the most effective treatment for autisim in children, fibo, IBS, crohn's, skin conditions and others. I am not sure where you got the impression that the diet has been abandoned but here remains thousands of folks doing this diet from all over the world, and thousands starting all the time. The diet is one of perhaps the only diet where the author, and heirs make little or no money. The book costs around 12 bucks and there is nothing else for sale. In my opinion, that is a strength and a weakness. Strength because no action is driven by increased profit, but weakness cause there is no money for advertising food testing... If you are interested, you can join the SCD yahoo group. I was amazed how active, positive and knowledgeable this group is.

I understand your feelings towards getting taking many different probiotics. A very interesting book I read was The Probiotic Revolution, by Huffnagel. Super interesting, explained complex medical concepts in a way that lay people can understand. I think this book will support your position and might be interesting to you.

I agree, 100% "So we should all stick with what works for us and change it up a bit if it doesn't." My issue is that I can not figure out what works for me well enough to get the consistent results I had before.

killcolitis - I bought some HCL. I have not started it yet, as I just started the s. bourardii and do not like to start two things at once. I will start this next week. I agree that "It may be that your inability to digest carbs is causing the SIBO?"

Thanks for the thoughts and input.

dave
Posted 4/13/2013 3:34 PM (GMT 0)
Dave, sorry if I were unclear, I said that for celiacs it was abandoned when they realized that it was only gluten that had to be excluded. As for the chicken and foods that bother one day and not the next, then again on another day. In my case the only reason for that would be left overs because of the yeast, it will not bother me the first or second day but on the third it probably would, but if I prepared the same dish the next week it would not. Another for me is seasonings, It seems lately that either inion powder or garlic powder are bothering me, though the only ingredients are onion or garlic with no additives I think I am developing an intolerance for one or both?
Posted 4/13/2013 4:27 PM (GMT 0)
Cheers, thanks for the clarification.

Have you looked at Low FodMap diet? Both onions and garlic are to be excluded on this diet. Given your aversion to these two, you might also look at the other foods to be avoided.

Also, unless it the spices are from Penzey's (they have brick and mortar and online) then it is likely the spices are not pure (remember US labeling laws do not require listing all ingredients). I now buy all spices from these guys. Not only are they way better in quality but they cheaper or about the same price as store bought stuff. And BTW I do not have anny interest in these guys, except they are the only spice seller that will put in writing that their spices are pure

Thanks again for your input, i really appreciate it
dave
Posted 4/13/2013 10:14 PM (GMT 0)
I think I am developing an intolerance to one or both due to overuse. But it is possible that it is from the seasonings, though I seem to have issues when I cook with the whole food as well. I use garlic and onion generally together in many or most meals and use it as a seasoning instead of including it on my food rotation plan.
I have only glanced at the FodMap diet but haven't done any real reading on it, I just read the lists and saw that some of the High FodMaps were some I could tolerate no problem as well as some of the low FodMaps were things I could not tolerate. But I never got around to reading about the science behind it or how to actually apply or follow the diet.
I will definitely look into Penzy's, I have never heard of them so I don't think we have one near me, but I do do a lot of online shopping. My husband does the grocery shopping and has gotten really good at reading labels, but he usually gets the McCormick brand seasonings, I know that some of their mixed seasonings have MSG and such, so wouldn't be surprised if it is all contaminated. I would love to find some great spice mixes and rubs. I have a hard time with spices and herbs for one because of the stuff that they add but also because yeast is probably there just from the drying and processing. But salt alone is boring, I am allergic to black pepper, the rest of my family thinks red pepper is too hot, and fresh herbs are just harder to work with, especially since I am too lazy to go out and pick them every day;) So onion and garlic are a go to source of flavor, like bacon they just make everything taste better lol.
Have you ever thought that yeast was an issue for you? I know that SCD is bakers yeast free. I have really wanted to try the S boullardi but am afraid since it is so closely related to bakers yeast? Have you noticed any improvements? I know that permeability has to be an issue for me because I develop so many intolerances, and it is supposed to help with that. But I am quite happy with my health right now though it would be nice to be able to eat anything I want and not have to worry if there will be consequences for it. S Boullardi has been studied in crohns and shown as promising, but I haven't found whether it was studied at all in anyone with a known yeast intolerance.??? One little Dorito can send me into a tailspin, I don't know what a whole capsule filled with yeast would do?
Posted 4/13/2013 10:55 PM (GMT 0)
I've been thinking about your question a lot, Dave, and what I think I'd try in your situation is to get back up to a therapeutic dose of Pentasa and see if that resolves the issue.
Posted 4/14/2013 11:52 AM (GMT 0)
kazbern, thanks for thinking about me. That is such an interesting thought.

Yesterday was a good day. Although I had urgency and spent time in the washroom, I did not have a BM. I think this was happening in the past but this is the first time I noticed. I also upped my veg yesterday, so more fiber, and was a bit worried in the back of my mind that it might have the opposite effect. I am keeping a detailed journal, that includes a bunch of stuff including food and what happening in the bathroom. I have started this before but never saw anything of value, so stopped. I think this might be more insightful than I thought.

I think your recommendation makes tons of sense and I am not sure why my doc did not recommend it. Perhaps because I am going to a new doc (not the one who diagnosed me). He had a pill cam done and it came back perfect. Where there was ulcers is now perfectly clear. In fact his comment was, I know the doc who diagnosed you, and she is very good, but at this time there is no evidence of Crohn's. So he is more focused on the SIBO and other stuff, vs the Crohn's.

For some reason I have zero memory when it comes to how I am feeling. When I feel good I would swear I have never been sick a day in my life. And when I feel poorly, it feels like I have been sick every day. So a journal is more important to me than most (this is a very new revelation to me). Somehow at this moment it feels like something is wrong with the waves in my digestive track or like there is a narrowing. Like a "plug" gets formed. Things back up, I can not go, then the attack happens which consists of brutal acid d which causes the pain. If that is the pattern really, then I want to know that, so that I can address it.

So I think my current plan is journal like crazy. See if I can see the cycle that I described is consistent and ongoing. If I can see the cycle, see if I can identify anything that impacts it. I am going to add back in more veg and fiber.

I am on the fence re adding the therapeutic dose of Pentasa right now. I do not want the pentasa to make the pattern go away. If the pattern is really there, then I would look for another path to solve it permanently besides pentasa. So hold off on increasing the pentasa..??

Does this ramble make any sense or have I completely lost it? Please do not hesitate to say I am off track. I am confused and am not 100% sure of the best next move.

thanks so much
dave
Posted 4/14/2013 12:52 PM (GMT 0)
I totally understand what you're saying and I think you're brilliant for journaling. I am like you - whatever is happening to me at a certain point in time is how my brain thinks is always true, for better or for worse.

The pillcam is a great tool for discovering ulcers in the small bowel, but it cannot take a biopsy. Crohn's is a disease of the deep layers of the bowel and I'm not sure I'd rely on visuals only to say I was clear of disease. I assume your current dr has also taken blood and looked for inflammatory markers. How about a fecal calprotectin test just to be sure there's no inflammation?
Posted 4/14/2013 1:48 PM (GMT 0)
For some reason I have zero memory when it comes to how I am feeling. When I feel good I would swear I have never been sick a day in my life. And when I feel poorly, it feels like I have been sick every day

Bingo! I'm similar >_>.

Unfortunately I cannot think really think of anything to help, since this is largely beyond the stuff I know about. I think I agree with kazbern, though: more testing to exclude/confirm Crohn's sounds like a good idea, including blood tests to look for inflammatory markers. (It has to be said, though, that blood tests are not perfect. Some people - like me - always had raised inflammatory markers in conjunction with active disease but there are some people whose inflammatory markers never rise. Still, it is not exactly difficult to get a blood or stool test done.)

Good luck. I hope you feel better soon :p
Posted 4/15/2013 12:56 PM (GMT 0)
I have to say it is a reassuring for some reason, that I am not the only one who has no memory of my health. This is so true for me that it is a bit weird and I would almost have to question if the old brain was working right if it only happened to me.

I upped the pentasa to 6. If nothing substantially changes I will keep it here for at least two weeks. I upped my low carb veg. It just does not feel healthy to me to eat so much meat every day, even if it is. I am keeping with the s boulardii for now. I think two per day.

Caution, next paragraph is bathroom graphic. I went after 2 days. It feels like the guts shut down after the last "attack" to recuperate. It was very dark, almost black and soft, barely formed and acid. Some pain in anus/rectum but only a little. Does that tell me anything?

After using the bathroom, guts are a bit sore and do not feel very good.

I am going to contact the doc and get some testing done for inflammatory markers.

Thanks for your good thoughts and support
dave
Posted 4/16/2013 1:15 PM (GMT 0)
Yesterday was yet one more bad day (of course not nearly as bad as many here). The pattern repeats.
A pretty darn brutal day. Cramps, pretty bad d, feeling beat up. Thought I would close my eyes for just a bit and took a 3 hour nap (I almost never sleep during the day). After the "attack" started feeling better. Ate a normal dinner.
And feel not bad to day, except for the sore guts from yesterday.
I am going to the doc today. I am going to up my meds, to what ever it takes. I am considering going back to entocort.
I am going to get more testing done. And for some reason I think I GI wave issues. There has to be an explanation to this pattern besides Crohn's or SIBO.

dave
Posted 4/16/2013 5:00 PM (GMT 0)
Dave, I just want to remind you that even when you're doing everything right, sometimes a flare comes up and bites you in the ass. Maybe you had a cold that triggered an immune cascade, maybe it's seasonal allergies....whatever. If this is a flare, I hope you recover from it quickly. I don't think it would negate everything you've done for the past few years to control your disease.
Posted 4/16/2013 5:11 PM (GMT 0)
Thanks for your kind thoughts.

I like your choice of words "bites you in the ass". Feels correct, if it is a fire breathing dragon...

BTW - I am sorry to be a whiner, especially to those who really suffer with this DD. I know what I am going through is nothing to compared to folks who have it bad.
Posted 4/17/2013 1:17 PM (GMT 0)
I went to the doc yesterday. Although I like his open mindedness, I am starting
to get uncomfortable that I seem to lead the conversation.

He is starting to use the dreaded IBS words in every interaction. I say dreaded
as IBS only describes symptoms and does not describe cause or provide much
insight into treatment. Basically he does not have a clue and really he is not
sure where to go from here.

He diagnosed SIBO. I went through 2 rounds of antibiotics, that did nothing, so
now he is questioning the SIBO dx. I had a straight line rise in hydrogen when
tested. SIBO should have a dip and then rise. I asked him if the SIBO dx was
wrong and he started with some medical mumbo jumbo that meant nothing except he
does not feel like more antibiotics will help.

I asked him about fissures and he said that as the pain is only there with the
cramping that it rules out fissures.

Although I talked about a burning/acid sensation, he said that is almost
impossible, as waste is the opposite (alkaline). If it was acidic then it would
be caused by something being wrong with the stomach (i forget) and we would see
ulcers in the stomach and other places. So ruled that out.

I asked him about metemetrx stool test. He has never heard of it. I wish I could
have provided some NHIH research, but I could find detractors on the web, but no
valid research paper when I looked. When I described the test to him from my
very little understanding he said he has heard of something like that. If I can
find research to support this test or something like it I might be able to talk
him into it. After I confirmed that I have traveled all over the world including
quite a few 3rd world countries, he is scheduling a bunch of tests including
parasites and other potentially infectious stuff.

I did get a Px for Hyoscamine, which is an anti spasmotic for the colon. You
take it when you feel like an attack is coming on and it should work instantly.

As well as the parasite ect testing I am going to get some crohn's inflammatory
markers testing done. Is there anything else that should be done except the normal tests?

So bottom line is bla bla bla, seems like I am right back to where I was when I
was 15, the bad guts and no one really has a clue.

I am going to do the testing, take the new meds, and the old, which will take a
couple of weeks and use that time to figure out the next steps. I am not and can
not, just going to accept "we do not know, live with it"

Thanks for all your support.
d
Posted 4/17/2013 2:20 PM (GMT 0)
I feel you on the whole IBS thing. Hate that.
Posted 4/17/2013 3:35 PM (GMT 0)
hopefully some of his tests lead somewhere in the right direction for you. As for not believing you about the acid D, perhaps if you bring him some printouts about all of us that describe the same complaints. Or better yet next time it happens you can bring him a nice big cup of it to test:)

When was your last scope? did he bring up doing another one to check on the stricturing or narrowing you suspected might be occurring?

I thought of one more odd ball thing that might help a bit with the symptoms but not the cause unfortunately. Baking soda water! You can use ph test strips if you have them and add baking soda to your water till it is at a ph of about 7.5, or you could just add about 1/4 tsp of baking soda to 8oz of water. and chug it, drink a big glass every hr or so when you are starting to feel backed up or when the acid D starts. however I wouldn't drink more than 3-4 glasses in one day. However it is alkaline so do not drink it within an hour or so before or after eating bc it will neutralize your stomach acid.

I started doing that when I would stricture and get backed up, I could feel that my colon on my right side was hugely inflamed and hard from everything backing up and not moving through. After the first glass the pain would start to subside and by the 2nd or third my bowels would open up and release everything they had been holding in. I am not sure exactly why this works however I got the idea from reading about inflammation and how it can not happen in an alkaline environment. So I googled about drinking baking soda water to see if it was safe, sure enough some people do it daily just as a source of alkaline water(I wouldn't but apparently it is safe). Later, a mom on another forum said that her childs dr had told her to give her child baking soda water when he was having an allergic reaction(not crohns related, or anaphalactic) I looked that up as well and it is supposed to counteract the acidity that the body creates due to an allergic reaction.
When I was using the ph strips to measure my own alkalinity I found when I was really feeling crappy it was very low, as low as 5.4 at times, about 6.8 I felt ok and 7.2 I felt fantastic. And the baking soda water would raise my alkalinity as well as calcium, I think tht is also why I feel so much better when I drink bottled water that has calcium carbonate than when I drink tap water. We have a water softner that probably takes the calcium out of our water.
Also, they have been studying sodium bicarbonate in cancer and have had high success in some types by injecting tumors directly with a sodium bicarbonate solution, bc cancer also cannot thrive in an alkaline environment.

Post Edited (skofbengsk) : 4/17/2013 9:38:32 AM (GMT-6)

Posted 4/17/2013 4:40 PM (GMT 0)
Carbohydrate malabsorption can cause burning diarrhea because colonic bacteria produce short-chain fatty acids from the malabsorbed carbohydrate residues.

There are many other possibilities for the burning sensation such as excess bile, or enzymes, reaching the rectal mucosa and irritating the area (which feels like burning!)

Disrupted digestion, and diarrhea, from Crohns Disease, can be caused by other things (infections etc). It would be really useful to find out if you have ongoing inflammation....and maybe a colonoscopy will be helpful at some point.

I think you might need a better Doctor who is a better diagnostician?

good luck Dave.
Posted 4/17/2013 5:44 PM (GMT 0)
skofbengsk - very interesting re the baking soda. Next episode, i am going to give it a try.
"Or better yet next time it happens you can bring him a nice big cup of it to test:).. too funny
Stupid question, but what is the best measure of alkaline, sliva, urine, other?
I just had a pill cam and where there were ulcers, it is now clear. The doc does not believe it is an obstruction, or narrowing, but rather spasms that are temporarily restricting/closing the bowel. Potentially a another colonoscopy is in order.

Ambling - interesting you mention the carbohydrate malabsorption. You would think a GI doc would now it cause burning d. BTW do you have research that supports this. I find to get anything done I need to support what I say with proper research papers. I will look but if you have anything much appreciated. I am going to get some chrohn's inflammation markers testing done. It has been a while, what are the best tests. I think CRP is one, but can you please remind me what I should get

I agree, I think I need a better diagnostician. It is bad enough dealing with not feeling the best, this having to be your own MD makes it worse

Thank you thank you

Dave
Posted 4/17/2013 7:38 PM (GMT 0)
Saliva is more accurate as far as what is going on right now, the urine shows what is being flushed out, meds etc. and it changes slightly throughout the day so if you are trying to figure out in general then you could test several times a day for awhile. As far as getting your body more alkaline, I believe SCD is already a pretty alkaline diet, but lemons specifically are very alkalinizing, and I heard watermelon juice is too but I don't think I have tried it. Ginger is also alkalinizing and very anti inflammatory.

As far as inflammation testing the CRP is good to see how you are doing that particular day because it changes rapidly, so if something was wrong that day it would show it, but it wouldn't show if something were wrong last week and not today. Sed rate is more a compilation of how things have been recently. My current GP usually does sed rate, but I have had some that did both.  If I had to pick one or the other I would do sed rate bc it doesn't change as fast.

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