SIBO and Motility Issues

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JessicaGrace24

JessicaGrace24

Joined
Sep 30, 2019
Messages
45
Hi All,

I've been extremely frustrated as you may have gathered from my previous posts. My current GI suspects that I have SIBO (most likely methane dominant) due to my motility issues from areas of narrowing in both the jejunum and ileum. Rather than dealing with the structural issues with surgery she wants me to try a low carb, low fibre high fat and high protein diet as well as probiotics and an antibiotic (riflaximin) which I have heard is not completely effective with methane dominant SIBO. Currently where I live there is no way to test for methane dominant SIBO. I don't want to pay the money for the antibiotics when I have risk factors that put me at a high chance for SIBO reoccurence. I also do not think that any diet is going to completely solve the issues when my problems are structural. She won't up my dose of Stelara (I'm on the every eight weeks cycle) or add in methotrexate and wants me to wait until May for an MRI to assess if the jejunum narrowing has subsided as she is very insistent that it has to be an inflammatory stricture rather than fibrotic. I have been on Stelara since the beginning of August and have still been experiencing issues of partial obstructive symptoms every couple of months. I am at my wits end with doctors!! My CRP is 6.7 and Fecal Cal 181 which, since I have small bowel Crohn's is high and I've been feeling worse and worse since that test (which was over a month ago) so I'm sure it could have jumped higher by now. Any suggestions on what you would do in my situation?
 
Sorry, emotional distress certainly does make things worse. My personal take is that your Dr. sounds like she knows what she is doing. More and more GI's are looking to surgery as a last resort because there is no going back. The connection between diet and crohns does have some evidence. I think its worth a shot to go the diet route. But, I would make an honest go at it and commit for a few months and see if it does help.

I have talked to many people who went Keto or low carb and it made a world of difference. Sadly it doesn't work for everyone.

I have mild small bowel crohns also and have managed with diet and supplements. I thankful about how lucky I am to not have gotten worse over the last decade. I went the diet/supplement route about 3-4 years ago. The first year I noticed pretty good improvement in the first 3 months, then very little improvement on top of that over the next two years. I told my GI when he asked me, I was at 90% normal. It seems like I was saying 90% forever. Over the last year things have gotten much better.

So, my advice would be to try the low carb diet and commit to it, don't cheat. But I think anything is better than surgery or drugs. Just remember, its just food, it just gives you energy. Not eating chocolate bars is better then going under the knife!
 
My daughter is trying SCD in an attempt to tame her Crohn's and avoid surgery. The one thing I will say about diet is it is fine to try it and I am a firm believer BUT try a diet that has been studied well and get yourself in to a professional (registered dietician, nurse practitioner or physician) this well versed in advising on diet. There is a reason there is a professional solely dedicated to diet and the management of chronic disease (Registered Dietician). You can't just try a little of this or that. You have to pick a dietary approach (SCD, IBD Aid, CDED, GAPS, FODMAP or whatever) and do it 100% with strict adherence and a lot of advice along the way.

Incidentally, SCD has a great success rate with SIBO. But I agree with you, unless you address the structural issues that lead to SIBO in the first place diet can only do so much.
 
@crohnsinct Sorry O is still having trouble. Hope she has success with SCD. That is the diet I am looking at but I definitely agree that I don't want to do it without the help of a knowledgeable dietician. I'm already on Restoralax to try and help keep things moving better but it is starting to be less effective. Seeing my GI in Feb so I'll bring this all up then. Thanks!
 
H
lukesjr said:
Sorry, emotional distress certainly does make things worse. My personal take is that your Dr. sounds like she knows what she is doing. More and more GI's are looking to surgery as a last resort because there is no going back. The connection between diet and crohns does have some evidence. I think its worth a shot to go the diet route. But, I would make an honest go at it and commit for a few months and see if it does help.

I have talked to many people who went Keto or low carb and it made a world of difference. Sadly it doesn't work for everyone.

I have mild small bowel crohns also and have managed with diet and supplements. I thankful about how lucky I am to not have gotten worse over the last decade. I went the diet/supplement route about 3-4 years ago. The first year I noticed pretty good improvement in the first 3 months, then very little improvement on top of that over the next two years. I told my GI when he asked me, I was at 90% normal. It seems like I was saying 90% forever. Over the last year things have gotten much better.

So, my advice would be to try the low carb diet and commit to it, don't cheat. But I think anything is better than surgery or drugs. Just remember, its just food, it just gives you energy. Not eating chocolate bars is better then going under the knife!
Click to expand...
hi,

i also have mild small bowel crohns. What diet do you follow? And which supplements have helped? I would like to keep it in control by diet and supplements too. Thank you!
 
First of all, disclaimer. I don't recommend doing anything I have done, talk to your doctor.

Ok. I think I can trace the start of my Crohns to a bout of walking pneumonia I had in about 2006. I started having more frequent symptoms in 2010. But, its really tough to pinpoint because when you are a healthy person it is common for everyone to get a stomach bug once in a while. And when you have mild crohns a stomach bug is a pretty close symptom, at least to me. So I did the dr thing for a few years, IBS, some virus, blah blah. Finally had a pill cam with my 2nd dr and he found inflammation in my small bowel. He recommended tumeric, amp 500, and apriso. At this time I was starting to feel better mainly because I cut down my sugar intake. I don't have a lot of bad habits, but I drank soda. Switching to a less sugary drink helped a lot. I still drink carbonated drinks, but it has 1/3rd the sugar.

So, I did the apriso for a year. I was about 70-90% better before starting apriso. I felt the apriso was doing nothing. So I decided, like many here, to do some research on crohns. I have a PhD in nuclear engineering, which does not make me an expert in crohns, but it does prove I am a pretty good researcher. Which, I think I am pretty good. I read several books, dug through 100s of NIH research experiments. What I found was pretty interesting. There are so many NIH research trials that are done that have showed success against crohns with so many normal things that always end with "we recommend further research". You look for the further research and find nothing. Its pretty easy to see why, many of these succesfull things aren't patentable. That is not to say there is some secret cabal hiding simple cures, its just that if you ran a company why would you spend money on something you couldn't make money on? You wouldn't. So I created a growing list of things I wanted to try. Over the last 5 years I have tried many things. Most importantly, you have to go on these supplements for a long time, like 6 months plus, before you can make a fair assessment. Many people try something for a few weeks and give up. Its hard for me to point to one thing that has helped or hasn't, because sometimes you take things and feel better just by placebo effect. Crohns has a strong mental piece with it. I will give you the list of things I take now, and the list of everything I have tried. its important and difficult to find the right dose. For example, there was just a recent study on omega 3s. What they found that omega 3s at 1000mgs did absolutely nothing, zero health benefit. But if you stepped it up to 3000mg there were all sorts of benefits. Meaning, that many drugs or supplements have a correct dosage, and a little doesn't necessarily help a little. I tried the 6 week bismuth treatment, aside from a black mouth and stool, not sure it did anything. May try 500mg of pepto every day for 6 months. Read a good study on that. I think treating it like you are infected with a virus is a good way to start. Look at the studies on worm wood, I think it was 500mg 3 times a day but can't remember the timing. I think that is a good place to start.

now
Vitamin D plus k2 - 5000iu D (I get tested every 6 months to make sure I am not over dosing)
omega 3s 1000mg (but I am going to up this to 3000 for a while like 3 months)
psylllium fiber pills
digestive enzymes (taking a new brand which may be making a difference. Too soon to tell. I took these before but a different brand and found it did nothing)
probiotics. Honestly, I have tried like 20 different brands. I am not sure I found any one brand better over the other and I tried visibiome, vsl3 etc. I am not sure these do anything but my gi says take them so I do.
vitamin C (I might do some more research here in the future. Might try a vitamin C flush using super high doses)
tumeric ginger pill
hawthorn berry, although I am taking this for slightly elevated blood pressure. When my symptoms started my first signal was an elevated blood pressure. Not sure why they are linked, but this leads me to believe the crohns virus theory.
Lauricidin. 3 scoops for day. Just started this a month ago. Planning to use it for 6 months. A month in, I haven't noticed anything.
st johns wort. Just started, using it as combined with Lauricidin. A combo I read about. Again, planning 6 months.
super L lysine, been on this for a while. One of the first things I took.
L glutamine. I have tapered off this. I may pick it up again. I did a 40 grams per day treatment for a month but didn't notice anything. 5 grams per day in the morning on empty stomach is pretty standard. Just drinking a big glass of water first thing in the morning is probably the best thing.
qunol, just started this. Although I did take it before. I don't think it does anything but I am giving it a try.
EPiCOR. Just finishing 6 months of this. Don't think it has done anything.
olive leaf extract. I think this helped me go from 70% better to 90%. I will probably stay on this for a while. Pretty good literature on decreasing viral load.
Glutathione. Supposed to be good for gut health. Been on this a while, can't say it has done anything.
Melatonin. I think this helps. Although I can find anything on dosing. 5mg seems ok, But I have read 10mg.

If you were to ask me for a simple recommendation of the things I think helped me.

Vitamin D K2 5000 iu
Psyllium Fiber
Tumeric
L glutamine
Reduce sugar intake.
No eating after dinner until breakfast. get bowel rest.
Melatonin.

I wish I could get an inflammation test to tell me if anything is working. Sadly, unless I can convince the insurance company I need a montly pill cam at 1500$ a pop, nothing exists. So I just have to go by how I feel.
 
Wow, thank you so much for your detailed reply. I am so impressed and thankful to you!! Please keep sharing your information whenever you get a chance!
 
I am trying Enzymedica extra strenth right now. Too soon to tell. I am taking it before bed because you are supposed to take it on an empty stomach.
I am just taking 1 pill. If you read the reviews someone is taking like 4 pills a day and said that helped them, who knows what to believe, trial and error!
I have tried a bunch of others. Zenwise, Dr. Mathew. Now foods. I didn't feel any benefit from these, not saying they don't work because they have a ton of positive reviews. I just didn't notice a difference.

I think what makes it harder is that my symptoms are so mild. No diarrhea, no severe pains, etc. So I am looking for a really small change which is much harder to measure. If for example I was having diarrhea then I could easily just take something and when that stops it could be a good indication, etc.

In some ways us mild crohns people are on our own. Its not worth the risk to go the biologic/medication route, but there isn't any really good guidance on what to do, just anecdotal evidence.
 
just thought I would give you and update Kav. I started taking digest spectrum with every meal, 1 tablet. The bottles says you can take 2, but 2 per meal would be 6 per day, that is a lot of money!. Its been about two weeks since i started taking these and I think they have been working well, better than any other enzyme I have taken. I would say my normal gas bloating has gone from a normal 5 out of 10 range to a 1. My gas and bloating feels normal. I could be in placebo phase, or I could just be on a good two week stretch as crohns symptoms are come and go. But so far, these enzymes have been working well. I think its worth shot.

I have often thought my inflammation is a food sensitivity that I developed. I have mild inflammation. Apriso never did anything and my crohns indicators were inconclusive, my crp has always been normal.
 
lukesjr said:
just thought I would give you and update Kav. I started taking digest spectrum with every meal, 1 tablet. The bottles says you can take 2, but 2 per meal would be 6 per day, that is a lot of money!. Its been about two weeks since i started taking these and I think they have been working well, better than any other enzyme I have taken. I would say my normal gas bloating has gone from a normal 5 out of 10 range to a 1. My gas and bloating feels normal. I could be in placebo phase, or I could just be on a good two week stretch as crohns symptoms are come and go. But so far, these enzymes have been working well. I think its worth shot.

I have often thought my inflammation is a food sensitivity that I developed. I have mild inflammation. Apriso never did anything and my crohns indicators were inconclusive, my crp has always been normal.
Click to expand...
Thank you so much!! Was eagerly waiting for your update. I do have many small ulcers in small intestine. But my CRP is always normal. These days anything I eat gives me so much bloating and severe gas pains. I looked on amazon about the previous enzymes you told me about and was almost going to order. Thanks to your update, I will now order digest spectrum! Thank you very much!! I m praying you never get bloated and Pray that the enzymes will keep working for you!!!
 
Make sure you report back, I am curious if they help you. Of course if they dont and you post it, that will end my placebo effect!
 
I am not. I did make some dietary changes, trying to cut out sugar, eating smaller meals. Reducing fried foods. But, I still eat everything.
 
lukesjr said:
I am not. I did make some dietary changes, trying to cut out sugar, eating smaller meals. Reducing fried foods. But, I still eat everything.
Click to expand...
Thanks Luke,

I m currently on Latent TB treatment. The immunosuppressive medication in future will cause my latent TB to reactivate. So I have to finish the three month course. I will start the enzymes after completing the 3 month course. I really appreciate your help and feedback.
 
lukesjr said:
how did you find out you had latent TB? What were the symptoms?
Click to expand...
No, I dont have TB. They did a blood test called QTB Gold test which was positive but chest XRay was negative meaning I was exposed to someone with TB and the bacteria is dormant in my body. Any immunosuppressive medicine (like Crohns medication, biologics) can activate those bacterias and then I would get actual TB. So this is a three month treatment for Latent TB.
 
Hi Lukes,

I am here to update you. I finished Latent TB treatment end of june. Found an IBD specialist GI. she put me on entocort (budesonide) for 3 months. It didn’t do anything. I am still tapering it off and will be done withit by end of Dec, 2020. I also tried the digest basic enzyme supplement. It gives me headache, nightsweats and wierd burning on right abdomen. So I stopped. I also worked with a nutritionist who suggested Mediterranean diet. But all her suggestions made me bloated and gave me wierd bowel movement. My GI is recommending Humira. I am still in two minds, but also thinking it’s better to get on humira and stop the progression while symptoms are mild.

how have your experiments been? How are you doing?
 
I am still doing well, better I would say. Have you tried any fasting? intermittent, 24 hour fast, etc? Also, have you tried a short term 1 week EEN time of treatment? This person on here "Kiny" has some pretty good posts on the topic you should read about reducing bacterial load, etc. EEN is a good way to do that. Even, just try a liquid diet like Ensure for 48 hours and see how you feel.

I understand the apprehension about biologics, but I agree that continuing inflammation is also a very bad thing. I think we all need to way our own risks and choose a path.
 
I sporadically do the enzymes. I mainly go with how I feel. I am concerned about over taking enzymes and the effects on natural enzyme production. I am doing a but ton of supplements, probably to many but I feel great and have no symptoms so I am going to go with it.

I am concerned about "silent crohns", meaning I am concerned damage is being done and me not know it. Its not like I can get a colonoscopy every month! But, everything has risk, and I am going to go with how I feel.

I am attacking crohns as an infection and I take supplements that fight infection and reduce inflammation. I cycle through different stuff. I will post what I am taking later.

I think you should give either fasting or EEN a short term go, like try a week of EEN or fast 1 day a week for a month and see how you feel. Even try intermittent fasting (16/8).
 

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