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Healing the Gut - bloggy thread  This thread currently has 2,185 views. Print Print Thread
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misspudding
Monday, August 11, 2014, 9:00pm Report to Moderator Report to Moderator

Rh-, MTHFR, GT4 Explorer, ENTP rationalist
Ee Dan
Posts: 833
Gender: Female
Location: Seattle
Age: 37
Post 20


We had our follow up with the GI doc. He's happy with his progress. Up two pounds since last check up in mid-July. Grown 1/2 inch since June. Woo!

But he's been having constipation issues that have given him gas and bloating and make him not want to eat. The consistency of his stool is a-okay (type 4 and type 5 on bristol stool scale) but his colon is still so big, we think, that it's just not coming out fast enough. He's taking that motility enhancer with the 5-htp again and it's helping a lot. Keeping him down to 3-4 poops a day, which to me is perfect.

The biggest thing we're facing this week is allergies. It's been so much warmer than usual in Seattle (10-15 degrees above average for most of the summer), that even I'm having seasonal allergies (which is very rare for me). Ugh. Both DS and I have had red, itchy eyes and today he woke up with nasty congestion and just doesn't feel well. The high is supposed to be 93 today. When you don't have A/C (we usually don't need it), that stinks! I cannot wait for our usual rain and gloom to come back. Our bodies are so well adjusted to it that this summer feels not so great. Oh well...I'll be whining about the rain come January, I'm sure.

Hoping the rain returns soon (even if just for a day) and we all feel better!


Me: Celiac type gut problems; seizure disorder; MTHFR  DS: O negative; "atypical" IBD - SWAMI 44% Explorer
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misspudding
Saturday, September 6, 2014, 1:08am Report to Moderator Report to Moderator

Rh-, MTHFR, GT4 Explorer, ENTP rationalist
Ee Dan
Posts: 833
Gender: Female
Location: Seattle
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Post 21

Overall, things are good. I am very nervous to weigh the boy, but he looks better overall, is eating a lot, and still doing pretty good (had one minor nosebleed a few weekend ago that I think was from picking his nose...who knows?!). Hubby checked his height earlier this week and said he looks about the same from a few weeks ago.

He entered fourth grade this week. I was seriously nervous that he wouldn't make it, or that he'd need to be picked up halfway through the day. He loves it. But it seems like stress (even good stress) is affecting him. Today, around lunch, he said he had a tummy ache. He hasn't had a daytime stomach ache in a long time. I really hate this disease...so many things can influence it.

Still having constipation and gas, but thankfully, the 5-htp mainly seems to be working on both. We just have to keep his system moving so bad bacteria don't overgrow in his system again. So hard to do...his ND said the 5-htp wouldn't be forever, something like 6 months to get things back to normal.

Unfortunately the amount of 5-htp he's on makes him have some urgency before bed, and even gives him a little pain. But it makes him poop. We've been toying with probiotic sources, too, which has also added to the fun. Can't do Polyflora, since it has chicory. We tried a SCD-specific probiotic from Klare, but it was way too overwhelming for his system. Now we're trying a fermented carrot/ginger/sea salt (just carrots, ginger and sea salt with water at room temp to get some bugs in there, and that's it...no real fermentation process...just a simple, raw product). He's not doing the carrots, just a smidgen of brine. The jury is still out on whether it's helping or hurting. Wish Dr. D. would give us a solid statement on whether cultured vegetables are okay as long as they're beneficial veggies. It would help for those of us who don't tolerate yogurt, sauerkraut, or probiotics in pill form. Oh well.

I'm hoping the next update will be able how he's grown ten inches. I don't think that will happen anytime soon. Ha!


Me: Celiac type gut problems; seizure disorder; MTHFR  DS: O negative; "atypical" IBD - SWAMI 44% Explorer
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misspudding
Monday, September 8, 2014, 4:23am Report to Moderator Report to Moderator

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Ee Dan
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Post 22

Wow, weighed the boy tonight. He's 56 pounds! Up from 50 at the end of May! Yeehaw!!!


Me: Celiac type gut problems; seizure disorder; MTHFR  DS: O negative; "atypical" IBD - SWAMI 44% Explorer
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misspudding
Friday, September 12, 2014, 5:00pm Report to Moderator Report to Moderator

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Ee Dan
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Post 23

Okay, so we're slowly slipping back to symptoms like we were in the spring. Such a bummer! Doesn't really seem like it's the 5-htp, as we increased it, then decreased...seems bigger picture.

Naturopath said SIBO can be a real pain to overcome. She said it usually takes 2-4 treatments (antibiotics or natural antibiotics) to get over the hump, if you will, and finally get to mostly normal. I don't think he's having accidents at the moment, but he has pain at night/in the morning. So we're going back in for breath testing in the next few days.

It's really frustrating. I think a lot of it is stress. I've heard from a lot of people in the IBD community that stress is the biggest single factor in their health. So many have achieved really great success on diet (to the point of remission in many cases) and their jobs or personal lives give them so much stress they have a flare. I know school is good for him and he enjoys it, but I do think it's provided enough stress to have a negative impact on his Crohns. *sigh*

Well, at least I'm hopeful. He's achieved so much (remission, basically) in the last few months. We just need to keep his gut moving so that the bad guys (or even the good guys) don't overgrow again. Staying positive!


Me: Celiac type gut problems; seizure disorder; MTHFR  DS: O negative; "atypical" IBD - SWAMI 44% Explorer
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misspudding
Wednesday, September 17, 2014, 7:50pm Report to Moderator Report to Moderator

Rh-, MTHFR, GT4 Explorer, ENTP rationalist
Ee Dan
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Post 24

Breath testing today. Couldn't make it past the baseline breath test, his gut bacteria are producing so much gas. Big bummer, but thankfully, that's the answer and not something more serious.

Oh well...at least we know now that we need to keep his motility going after whatever treatment we do for the SIBO this time around. And keep doing that until his colon finally shrinks enough that he doesn't have all of that stuff in him causing the SIBO, causing the motility issues. And then we can finally start him on the methylfolate, which will totally get his body producing neurotransmitters so he doesn't have motility problems anymore! Hard to believe that probably won't be for almost another year. Sheesh.

Guess it takes years to get in such bad health, it's not surprising it takes a long time to reverse it. Oh well.

Here's to hoping he feels better soon!


Me: Celiac type gut problems; seizure disorder; MTHFR  DS: O negative; "atypical" IBD - SWAMI 44% Explorer
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misspudding
Sunday, October 5, 2014, 11:45pm Report to Moderator Report to Moderator

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Ee Dan
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Post 25

Very bummed. Last time we did breath testing for SIBO, we followed it with rifaximin and a bowel cleanout. It was very effective and the followup breath testing was negative.

This time around, we only did rifaximin and it seemed to help, but the ND wanted to followup with a botanical antibiotic to address the methane producing bacteria (rifaximin seems to only work on hydrogen producers...so they usually do rifaximin + neomycin for constipation). I'm reluctant to do neomycin because it tends to cause hearing loss and I've had problems with that my whole life, but rifaximin seems to have a great safety profile (and in our experience, it's been fine).

The botanical antibiotic we were using was artemisia annua (sweet wormwood, not be confused with the absinthe variety of wormwood). Well, on the artemisia, DS's symptoms seemed to get worse. ND thought it might be die-off so said to stop for a few days then start up again at half dose. Well, it'se been a few days and still has gas/tummy pain.

And we're back to accidents, too, as of today.

I am so tired of this constipation/SIBO/Crohn's c**p! I just want my kid to be healthy and happy again. I want to quit this SCD and get my kid on sweet potatoes and brown rice and seaweed and all of those things that make me feel better, but then I keep hearing stories from other BTD-ers who have done SWAMI with SCD and it's been what works for them.

I would love to do the O Polyflora probiotic, but chicory is a black dot avoid, so staying away from it.

That's the update. I have no freaking clue what we're going to do next.


Me: Celiac type gut problems; seizure disorder; MTHFR  DS: O negative; "atypical" IBD - SWAMI 44% Explorer
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ABJoe
Monday, October 6, 2014, 12:11am Report to Moderator Report to Moderator

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You mention the stress as one possible factor causing the SIBO issue to return.  One other issue that is probably having an effect is cleaning out waste from the body.  There is a great capacity for storing waste when the bowel isn't working well, but all of this junk starts being cleaned out through the lymph system etc., when the bowel starts working again, that it often overloads the system and causes SIBO to return.  Keep doing what worked to continue to beat it.  I know it is frustrating when it seems like you do 2 steps forward and 3 steps back, but he'll keep hitting higher highs and higher lows - although it will continue to be up and down.


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misspudding
Thursday, October 16, 2014, 6:00pm Report to Moderator Report to Moderator

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Thanks, ABJoe! Didn't see your post until now.

I'm sure stress is a huge component. He did really well for several months and then after a week at school, it all started coming back. Appreciate your kind words.


Me: Celiac type gut problems; seizure disorder; MTHFR  DS: O negative; "atypical" IBD - SWAMI 44% Explorer
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misspudding
Thursday, October 16, 2014, 6:08pm Report to Moderator Report to Moderator

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Post 26

Well, here we are. Kind of back at square one, but dosed up with turmeric and fish oil and methyl B-12 to avoid another flare.

What we failed to take into account back in May was that DS had encopresis, which is being so backed up your colon expands to make room. It's painful. He tried a go with Miralax that just made things worse. Ultimately, mineral oil and magnesium are the tools that seem to work best.

The miralax seems to break down into food that feeds the really bad bacteria (the methane producers).  I know this from my own line of work. So it is verboten from here on out, except in a hospital cleanout scenario (where they give so much via mouth tube that it just works). All of his specialists know this.

Unfortunately, what ended up working back in April, when he was hospitalized, was the hospital cleanout. It seems like that is ultimately what made him feel better. So after that, when we were in the hospital, I said to one of the docs, "so, we still need to keep giving the magnesium and oil, right?" to which the doc said, "Oh, no. Well, you can, but you really don't need much now." In some ways he was right. But we had an encopresis specialist we were working with who just dropped off of the case when he was diagnosed with Crohns. She said, "That's his problem, not constipation. You don't need me anymore."

Unfortunately, we do need her. Our main pediatric GI doc said, based on his amazing bloodwork at the end of August, "This isn't classic IBD, I don't think. Maybe it was constipation induced colitis? I mean, that could happen, in theory."

So, we're going for an X-ray today (boo) to determine how backed up he is. After that, we'll either do the standard cleanout we tried before April, for a few weeks, and if that isn't enough with the special diet, than we'll be doing the hospital cleanout again. Which should make him feel better! But after that, we'll need to keep him in motility enhancers and stool softeners for probably the next year, along with special diet.

It's so frustrating, but I have seen him feel better and I've seen what works so far! I know it's just a matter of sticking to it and following the diet, and keeping the stress down. I'm hoping by this time next year, it will all be just a bad memory!


Me: Celiac type gut problems; seizure disorder; MTHFR  DS: O negative; "atypical" IBD - SWAMI 44% Explorer
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Mother
Thursday, October 16, 2014, 11:08pm Report to Moderator Report to Moderator

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None of the fiber type things work for me at all. I know other forms of magnesium are recommended but mag oxide works all the time. 750 mg, I think it's Natures Bounty from Walgreens or Walmart. Cheap and VERY effective. Take just before bed with a glass of water. It is the only thing that works consistently. It might take 2 or 3 days for results and then you are home free.


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misspudding
Saturday, October 18, 2014, 5:04am Report to Moderator Report to Moderator

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Ee Dan
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Quoted from Mother
None of the fiber type things work for me at all. I know other forms of magnesium are recommended but mag oxide works all the time. 750 mg, I think it's Natures Bounty from Walgreens or Walmart. Cheap and VERY effective. Take just before bed with a glass of water. It is the only thing that works consistently. It might take 2 or 3 days for results and then you are home free.


Yeah, his problems are bigger than just a little magnesium every now and then, but I agree.


Me: Celiac type gut problems; seizure disorder; MTHFR  DS: O negative; "atypical" IBD - SWAMI 44% Explorer
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misspudding
Saturday, October 18, 2014, 5:11am Report to Moderator Report to Moderator

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Ee Dan
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Post 27

Saw our old encopresis nurse specialist today after an X-ray. He's as backed up as he was a year ago. But the good news is he isn't flaring (yet). So we're starting up on a non-Miralax cleanout with mineral oil and milk of magnesia, then we're conferring with the gastroenterologist to see if he can handle senna or biscodyl on the weekends.

We may just have to do a hospital cleanout again like we did prior to endoscopy and colonoscopy in April. It was so effective. We know Miralax makes him sick and now I'm thinking the Miralax induced enough constipation and methane that it triggered the leaky gut which caused the Crohn's flare. I think for 95% of the population, a simple dose of Miralax gets rid of the occasional constipation, but if you're dealing with severe constipation (encopresis) with almost no motility and a SIBO set up, the methane-producing bacteria can break that polyethylene glycol down into the glycol and eat it up like any other carbohydrate or sugar alcohol. They just release more methane (which has the effect of slowing motility down even more). I know this from my own line of work with chlorinated solvents in groundwater...nothing will touch that stuff, but the methane-producing bacteria will. They're one of the only effective remediation strategies. They'll break ANYTHING down.

I really need to get a kickstarter going so someone will send me back to school to do a masters or PhD in microbiome or toxicology research. Will anyone fund me?! This is my new obsession and all of the health care specialists we've dealt with have said that it's a plausible theory. How cool would it be for me to fix a bunch of other kids out there?! I HAVE MY MISSION, GOD!


Me: Celiac type gut problems; seizure disorder; MTHFR  DS: O negative; "atypical" IBD - SWAMI 44% Explorer
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Mother
Saturday, October 18, 2014, 1:27pm Report to Moderator Report to Moderator

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Misspudding,

I wasn't suggesting a little magnesium every now and then. I was suggesting EVERY night and in  the form of oxide. Very little magnesium is absorbed in oxide. It pulls water into the colon and keeps things soft and moving. Far more effective than milk of magnesia as that can make things TOO loose and then the next few days are more distressing. Miralax makes me more constipated. I need NON bulk forming laxatives, such as mag oxide. Senna, phsylium etc all make me much worse. Again, I need no more bulk, but the opposite.

My Mom's Dr told her about this many years ago and it has worked for me as well as many people I recommended it to. They are amazed at how well something so simple, non habit forming and cheap ended their long term struggles with constipation.

Obviously it's your call


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misspudding
Saturday, October 18, 2014, 6:04pm Report to Moderator Report to Moderator

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Ee Dan
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Ahh, I see. I also was trying to say it's not just magnesium that he needs. That's great for stool softening, but he also needs a stool lubricant (the oil) and something to actually contract the colon muscle wall. Encopresis means his colon is stretched out and it can take years to shrink back down.

Milk of magnesia is the only one his nurse specialist allows because it's not hard on the kidneys (it's just magnesium oxide reacted with water), and it tends to be gentler (but we still give big doses because it's effective). He's still a kid.

Thanks for your suggestions! This is a long term, complicated problem that needs specialized care, unfortunately. I'm still pretty hopeful the magnesium and oil will do the trick!


Me: Celiac type gut problems; seizure disorder; MTHFR  DS: O negative; "atypical" IBD - SWAMI 44% Explorer
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misspudding
Monday, October 20, 2014, 11:45pm Report to Moderator Report to Moderator

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Post 28

What a difference! He was just constipated! After the first night on the magnesium and mineral oil, he felt a lot better. Been getting better since then! (We're at day 4.) Before Friday, most nights and mornings he was at a 6 out of 10 on pain. Now, most of the time, he's at a 0 to 2.

Whew! I think we're finally figuring things out, hard to believe (and knock on a REALLY BIG PIECE OF WOOD). Man, I hope no one has to go through what he's gone through. Gut issues stink!

I hope that any folks who might read this who deal with encopresis in little ones realize that it takes years of proper diet, stool softeners, and/or motility enhancers to get proper colon size and function back. Why our gastroenterologist and his team didn't realize that, but a nurse who has done this work for 20 plus years figured it out, I have no clue.

Our nurse specialist used to work with our gastro's department until they closed it because it didn't make enough money. Encopresis is primarily a psychological thing (kids get scared of the way a big hard poop feels when they're little, so they hold it in, and it just gets worse). So it's kind of like seeing a therapist to work through a mental issue. At the same time, the treatment other than the mental part, is just frequent sits on the potty, keeping a log of everything, and some cheap over the counter stool softeners. Not a lot of money there.

I know the gastro is going to want him to have a bunch of blood work to rule out a flare. He's not flaring (no temperature, no crazy insane bloating that makes him look like a pregnant woman), he's just constipated...but I know it's probably too risky to not check. Sooo...


Me: Celiac type gut problems; seizure disorder; MTHFR  DS: O negative; "atypical" IBD - SWAMI 44% Explorer
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A HealthNut
Friday, October 31, 2014, 2:42pm Report to Moderator Report to Moderator

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Hi, I use to be on the site several years ago but when my computer crashed and I was unable to sign in I drifted away for several years. So I have recently pulled my ERFYT book back out again and starting from scratch as my digestive system has been disrupted and aggravated.  Please excused me if I am asking a repeated question. I read thru some of the threads and did a search but nothing came up so here are my two main question for A's.

For healing the stomach I have read that pre digested fish capsules have had good results. I need healing and would like to know if anyone(especially A's) have any feedback on this.
My other concern is for a additional fiber... what is a good supplement to help in this area. I know you are going to respond by saying eat more fiber foods which I do as a vegetarian diet but I still need a supplement so please help with this.

Thanks for your help.
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Jane
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Are you talking about Seacure?  
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