Husband isn't very convinced all of this diet stuff is going to work. He gave me a sarcastic "good luck" last night. I was like, "What do you mean?" and he replied, "Well, who knows if it's going to work?"
He definitely has a point, but I know the alternative of just taking medicine is unlikely to work with DS because he's super sensitive to drugs like his mama. From the short amount of time taking the mesalamine/5-ASA drug (a derivative of aspirin), he seemed to get much worse (go figure...I get raging tinnitus whenever I take a baby aspirin). Now he's stable, at least. And we can't really tell if anything we're doing is going to help until he's off of the steroids. THREE MORE DAYS!!!
It was like when DS was a baby. I was nursing, and he got sick on Tylenol when he was teething. We figured out removing Tylenol is what "fixed" him but then he couldn't gain weight on just nursing and baby food (veggies and fruits) alone. They wanted me to quit nursing completely and start him on an awful elemental formula, when he was about 10.5 months old. I said, "give me a few months". The nutritionist was adamant we do the formula. We introduced turkey, instead. The kid gained weight like a champ! I totally remember his pediatrician saying, "I have absolutely no idea what you did, but KEEP IT UP!!!".
I remember explaining that to people in the months that followed. "Turkey burgers? REALLY? And you're still nursing? When are you going to wean?" I kept it up until he was 20 months old. He gained weight like a champ. He was happy and healthy! And he never got sick or had problems until I had to wean. Oh, those were sad days. So much sickness. So many colds. But that was day care after me going back to work more than anything else. Hell, if I could give him the boob juice again, imagine what that would do for him now! Ha! Of course, it'd be creepy as all hell nursing a 9 year old...
That being said, my experience told me that the key to healing this guy is avoid the avoids, focus on the beneficials BIG TIME, and follow my gut instinct! I know we can do this. The nutritionist at the hospital (I like her a LOT more than our nutritionist the first time around, because she deals with kids with GI problems all of the time) said she's had enough kids get healed and off meds on diet alone that I know it's possible. I just have to stick it out. We can do this.
I'm feeling overwhelmed, but I still feel empowered. I feel like nutritionally healing the body is something I just get. I've read every popular diet book and approach over the years (and tried them all, sadly). So I take bits and pieces of eat diet that "makes sense" and try to use that approach here.
There's paleo, vegetarian, South Beach, the Zone, Dr. Perricone, etc. I really did try them all. Each time, I learned what worked for me and what didn't.
I think the thing the I love about SWAMI (and BTD/GTD) is it's about maximizing nutrition, minimizing inflammation, don't be super restrictive about food "groups" and eat the foods that make you feel good.
I hated that about vegetarianism and paleoism. Both times, I felt good by the good stuff I was eating, but felt awful because of what was missing.
This long rambly intro is because everyone really is different! Case in point.
Last night DS had one piece of well-cooked carrot. It really seems like it set him off big time, as it seems to have the last time he had it. I know it should be SCD compliant, SWAMI compliant, paleo and vegetarian compliant. Every diet in the world LOVES CARROTS! But...if I look at the Hunter diet, it's a black dot avoid for the first three months. Not that my son is a Hunter, but SWAMI isn't perfect, especially when you're dealing with a kid who is still growing (he's only 9, he could very easily be a Hunter). I still think he'll probably be an Explorer (the fingerprints don't lie, sigh), but it makes me think carrots are iffy for Hunters with compromised guts. And maybe he's a Hunter-ish Explorer? Who the heck knows. But...we're all individuals here and until he feels better, I think we're going to limit the carrots in the short term until he shows really strong signs of gut healing (namely, that his daily nosebleeds end).
That's my little observation for today. Dr. D's plan is the most individualized out there, but we're still very much unique. Until someone invents a DNA-sequencing machine that also sequences your gut microbiome while it's at it, everyone is going to have a different diet and different tolerances.
Carrots are the thing that bothers me the most when my UC is active. As I mentioned in the other thread, I've been going through a minor flare although today I feel considerably better. I think the Canasa helps more than anything.
Extremely bummed right now. DS has bad bloating and diarrhea today.
We've been taking L-glutamine on and off to try to heal his gut, and it seems to make him worse. I know it gives me a raging migraine and tinnitus when I take even a tiny bit (Explorer much? Haha...). I read somewhere that yeast/candida can use L-glutamine as food. Not sure how that's possible, but given that the handful of times I've tried to get DS to use it, he's had more bloating.
I was so excited, too, because he came off of the steroids yesterday, and now this. Is it possible that now that he's off of the steroids, he's having some kind of weird die-off because his blood sugar is probably a lot better and his immune system isn't suppressed? It's so very, very frustrating.
I don't just want to just give him meat and broth for the next week. But what to do? As much as he does fine on meat, he seemed a little better on the low-fructose smoothies I started making him, at least for the first week (we'd been doing one 4 oz. in the morning and one 4 oz. at night since Tuesday). Just a 1/2 cup of homemade almond milk (almonds, water, sea salt), about 5 blueberries, 8 raspberries, and half a small banana (all bennies or diamonds). I didn't think it'd be enough to create a massive yeast situation. But I guess that's the nightmare of corticosteroids.
I did remember reading somewhere tonight in one of the candida discussion threads that Dr. D. recommended more variety than the "candida diet" that makes the rounds on the internet, because since O blood types are so prone to yeast to begin with, it makes more sense to get the immune system backed off and inflammation down more than trying to obliterate the yeast. But in the short term, I'm at a loss.
We do find out stool testing results in the next day or two, so we'll hopefully have some answers. I am wary of Nystatin and the other drugs. My own experience is that I get a flare up in yeast (athlete's foot, acne, etc.) when I don't limit the sugars in my diet and when I've been on oral contraceptives. My OC years are behind me at this point and my biggest trigger these days is red wine. When I've tried to just treat the symptom, athlete's foot for instance, after 14 days of a cream, I'm okay for a few weeks and then...bam! More athlete's foot. That is, if I don't avoid my triggers.
35% Nomad or Teacher - health history dependent Sun Beh Nim Moderator
Location: Orange County, CA, USA
Healing (gut or otherwise) isn't a straight line proposition... It is not all better, better, better - there are some ups and downs. You have to keep doing the good stuff and take the good with the bad. Usually, when I have (or have had) the worst symptoms, the most benefit was happening. It is very uncomfortable at the time, but this seems to be how healing goes.
I found that excessive limiting of sugar intake caused inadequate cellular energy so that the cells weren't eliminating waste. When I added beneficial sugars back into the diet, the waste load was overwhelming. My suggestion is to keep with the recommended portion size and frequency and the gut healing modalities - especially since the steroid use has ended and just get through the rough patches.
Well, a lot of things have changed since I last posted on here.
DS is totally off of steroids. It seems like his main symptom, stomach pain at night upon laying down, was probably heartburn or the beginnings of an ulcer. Supposedly, the same pathways how NSAIDs cause ulcers are the same for steroids. Regardless of whether or not the anti-inflammatory is non-steroidal or steroids...there's similar risk.
Gradually, over the course of a few weeks, his stomach pain has become much better at night! He has no pain, for the most part, during the day anymore. It's wonderful.
We began a SWAMI-fied version of the SCD diet the day we stopped the steroids. Aside from the aforementioned carrots, he's tolerating most foods well, even more fruit than he used to in his FODMAP days. It's pretty likely his problem with FODMAPs really was SIBO. It's pretty cool how he's trying a lot of foods he wouldn't consider in the past. Raspberries, cherries, pomegranate, almonds, macadamias...
We are doing SCD because it seems that it supposedly has the quickest results for changing gut bacteria. I think SWAMI would probably work over several years, but staying off of grains and root veggies, at least in the short term, is really helping keep his negative symptoms down.
Since his gut seems to be healing so quickly, his everyday nosebleeds are almost entirely gone! This is huge because it means the bacteria in his gut are helping him absorb vitamin K! It must mean his intestinal lining is healing enough for very good things to happen.
Two other big surprises for me during this whole journey:
I've dropped 17 pounds in two months. Mainly just avoiding the one thing I used to still eat a lot of: corn. Even with all of the stress, which normally packs the pounds on! I always felt bad for DS because he couldn't have bread or other normal stuff his friends could eat, so corn and rice were easy options. I suspect corn was a big trigger for my son's IBD.
I figured mustard couldn't be so bad (it's SCD legal), and I was feeling bad my son couldn't have ketchup on his burgers like all "normal" kids. Well, I let him try it a couple of times and...each time, his symptoms flared up! That was surprising to me, but not really, since Dr. D. has been telling us O's to avoid vinegar for years. Again, if your gut is injured, vinegar really is not your friend! Avoid!
Hoping for more good things. I'm very pleased so far with the food as drug approach.
There's enough science behind SCD that it's convinced me we need to avoid excess sugar, including agave. I'm trying to stick to things that overlap on both SCD and SWAMI. Carob isn't one of them, unfortunately. When his symptoms have cleared up entirely, I'll look into carob. I love the stuff!
I hear you, but we're doing strict SCD at the moment to make our GI doc happy (he wanted DS on meds but when he turned out to be sensitive to them, he gave his blessing for diet only, but only if we did strict SCD for several months).
Two steps forward, one step back. Every day, every week.
We started branching out from the pure beneficials list in SWAMI, adding some neutrals, but it was too much, too soon.
Since we live in the Pacific Northwest, it's cherry and berry season. My son loves cherries! They didn't seem to make him sick at first, but since his gut is still barely healing, too much too soon set him back somewhat.
I have since learned, from some folks who run an SCD website, that after bananas, you have to be careful with fruits high in salicylates. I didn't realize that salicylates are a kind of phenol. I remember reading in the GTD book something about how phenols are a ground of foods that can provoke sensitivity in folks like my son and me. Well, this SCD website indicated that phenols just go straight into the bloodstream in folks with an irritated gut, which causes an increased immune response. It absolutely seems to be the case with my son. It also explains why he absolutely didn't tolerate the 5-ASA (a salicylate) drug the GI doc wanted him on. SO FASCINATING!
So we'll continue on our bananas and highly beneficials list for now (which really only includes pineapple at the moment) and go from there. The good news is that every day, he gets stronger and healthier. The setbacks are fewer than they were. We're definitely learning a lot.
Met with the nutritionist today. DS is up in weight and has grown 1/3"!!!! Since June!
Tomorrow we meet with our naturopath to figure out how to start toning down the diarrhea. Technically, his poops aren't liquid, but he's just having such urgency and frequency...it's not "normal". After 2 years of constipation, this is just such an odd problem to have. We're going to start up the folate, finally, after three months on methyl B-12. Hopefully, that'll get the neurotransmitters in gear so his gut finally calms down. Having an MTHFR gene is no fun...there's always a gut problem with MTHFR.
Technically, his poops aren't liquid, but he's just having such urgency and frequency...it's not "normal". After 2 years of constipation, this is just such an odd problem to have.
I don't think it unusual at all... As the gut starts working properly again, there are variations between the limits. Also, when the body dumps large amounts of toxins, quite often it is rather frequent and urgent...
We saw our naturopath today and she had the results of DS's stool sample from back when he was still on steroids.
Surprises: No pathogenic yeast! No pathogenic bacteria. No parasites. Still really shocked about the yeast because DS still gets some gas and occasional minor pain, but I guess that's just undigested food being broken down by good bacteria (gas) and inflammation (pain).
Beneficial facultative anaerobic bacteria were at okay levels. Beneficial obligate anaerobic bacteria were incredibly low. Since the obligate anaerobes are the ones that tend to benefit from prebiotics and fiber, our ND indicated that he needs more fiber. I guess it's not all that surprising that two years on a low FODMAP diet would do that. It's just more proof that we were dealing with SIBO. *sigh* The two fibers she recommended were beta-glucan and arabinogalactan, surprise surprise.
More interesting stuff about the obligate anaerobes, they tend to do a lot of the conversion in the gut for things like butyrate and short chain fatty acids, which are very good for the gut. Without those critters, you get prone to inflammation or leaky gut, which can of course lead to inflammatory bowel disease. Obviously they convert things like vitamin K and biotin for the body to use. DS has been battling nosebleeds for at least a year, but especially so the last month. They're finally remitting (last one was over a week ago...sure beats several every day!). Interestingly enough, my sister and I have battled acne for years (hers was especially bad). DS had cradle cap until he was at least 6 years old (once a kid isn't an infant anymore, it's called seborrheic dermatitis). Biotin is one of the vitamin supplements recommended for both. It really is all about gut health, isn't it?
Beginning today, DS is taking an SCD legal probiotic and we're going to pick up some prebiotics. I know Dr. D. has recommended arabinogalactan (larch) extensively, but I can't find it on any of the SCD legal lists. I have found that beta glucan is approved on SCD. Our ND gave us a link for a yeast-derived beta glucan (oats and barley are the other two big sources beta glucan comes from, both are avoids for my DS). In any event, beta glucan seems to help the body activate a form of compliment (C3) which tends to be deficient in inflammatory bowel disease. The idea is that compliment isn't doing its job keeping the microbes at bay, so the acquired immune system launches the big guns and the collateral damage on good tissue is too much. I suspect arabinogalactan acts the same way.
DS is doing much better, gaining weight, and we finally have some solid science as to why he was so sick. I'm cautiously optimistic.
We started a probiotic. His ND really wanted him on a Klare Labs formula, and they do have an SCD-safe one with no starch or FOS, so we started with it. We had been doing a general L. acidophilus and L. rhamnosus probiotic for a few months and he tolerated it just fine. But it was a general kind that you get at the local health food store, and it only had 5 billion CFUs (colony forming units) per pill. This new one was 23 billion CFUs per pill. That's a lot of bacteria.
Well, I made the mistake of giving him one full pill to start. I don't know if it's that it's not a blood type specific formula, or that it's so many CFUs, or that there's some kind of "die off" going on, but he had some gas and pain that night. Backed off to 1/3 of a pill the next day, did better. Still not great, though, so stopping it for the time being until no symptoms, then restarting at a low dose. Our other probiotic has potato starch in it, so it's verboten, even though he tolerated it.
Since we have to do SCD right now to appease our GI doc (and I'm totally on board with it because it is helping), I feel like this is our best option. Polyflora has chicory in it, which isn't allowed. I know I get gas (minor, but still) from chicory, so I have a feeling it would seriously make my boy miserable at this stage in his healing. Still don't know if larch is okay on SCD. Wish I could find an answer somewhere, since it seems to be such a great fiber.
Healing the gut is such a pain in the butt. Literally. Oh well, at least our good days are more than our bad days, and that's pretty fantastic compared to the last year. Still no nosebleeds for a couple of weeks, so that's good. I'll take it!
Oooh, we may have turned a corner with how well DS has been healing. Still no nosebleeds for weeks. And he's done cooked fruits and juice with a high polyphenol content (grape juice, pomegranate juice) with no problems! He also seems to be tolerating raw fruits with low polyphenol content with no problems.
Also, he spent 5 hours at a friend's house yesterday for a birthday party. They had a snow cone machine that made snow cone ice that my son was able to do grape juice with. He loved it! And he's able to tolerate almond flour muffins with no problems. Very nice!
I can't imagine where we'd be if he had spent two months on mesalamine with no diet changes. I'm pretty sure he'd be back in the hospital. So glad we're able to do this with diet. I know not everyone responds 100% immediately to diet intervention...for a lot of people it takes years, and some still need meds. I think I wouldn't have been so on board if a) I hadn't been so familiar with BTD/GTD (my endometriosis disappeared in two cycles once I was strict about being gluten free) and b) I didn't have an aunt who had IBD back in the 1960s who cured herself through diet. She's 75 and you wouldn't know it by how young she looks and how healthy her mind is. She has nothing but perfect colonoscopies these days. Alas, I digress...
Now the big goal for DS is weight gain. I've heard from a lot of folks in the SCD community that once you heal the gut, it all just "works" and people put on weight (if they need to) or lose it (if they need to). He's already grown a small amount (1/3" in a month, which could be statistical anomaly) but it's a good sign, nonetheless. Big sigh of relief for where we're at at the moment.
I keep a gratitude journal lately so that I can keep track of the positive stuff that's been going on, so that I don't lose track. Because the occasional setback is just so hard. That's also why I'm keeping this "journal". So that I can keep track of where we've been, what I've freaked out about, and how much overall healing has been going on.
That brings me to today. Things have been so smooth for weeks, that it's been great. No nosebleeds, so much less pain, lots of weight gain. DS looks so much better than he did before. But there's the elephant in the room: encopresis. My son suffered from being so chronically constipated that his colon was very stretched out. We saw a specialist who, though we loved her and she was ultimately who helped with getting diagnosed with IBD, had a standard treatment protocol of laxatives and stool softeners. Most kids who don't have IBD respond pretty well to those treatments, since they tend to be more psychological than physical. Having had a stretched colon means, even with the best diet, a much greater volume of stool hangs out in his colon and unless he's incredibly compliant (whatever that means at the moment, I'm not entirely certain, because it depends on his gut health), he can get constipated again.
By constipated, I don't mean hard little pellets, or no poops at all. I just mean that he can't evacuate completely. He has 8-10 poops a day right now, so he's definitely pooping. But he's having accidents. He didn't for a while, and now he is. They're very small, but they indicate that his colon is full of poop. And I'm panicking. Because I'm thinking it automatically means we're back at where we were right before the hospital.
I don't know what it is, but I have some theories. I have a message into our ND this morning. She's seen plenty of kids with this problem, so I know she'll have an answer. I think we'll probably go back on a motility enhancer that contains 5-htp. What stinks is it gives him other side effects (headache).
Frustrated and scared. This isn't easy. I just want him to feel like a normal kid.
The 5-htp is helping. Our naturopath agreed it was the right thing to add at the moment. She said the next big thing is we really need to start that prebiotic fiber. Since I still have no idea on the larch and whether it's SCD legal, we're going ahead with beta glucan.
I need to remind myself (constantly, it seems) that one night of symptoms does not mean that everything is over. I just panicked since everything was going so well.
I went and bought myself some rhodiola this afternoon. I've taken it in the past and it's been so helpful in coping with stress. It took me a long time to figure out that rhodiola was the substance that was so helpful in a complex I took several years ago. In any event, I wish I had purchased it sooner.
Here's to progress! And gratitude! And rhodiola...
He has had no pain for five days and he's down to 3-5 poops a day, which I think is on the high end of normal, even for me. Sweet!
He's up about three pounds from two weeks ago. He's eating like a champ. He's tolerating uncooked fruit just fine. He's not interested in eating eggs at the moment, except when they're baked into food. But he's not reacting to eggs (never did unlike like a lot of IBDers). Ghee is tolerated just fine, so I've been cramming it into almond muffins. He likes watermelon. Thankfully, it's a diamond on his SWAMI. I'm pureed it and turned it into a granita. What an easy way to get nutrition. Pomegranate juice, another diamond, is a big favorite. I'm only doing about 1/2 cup with a cup of water added to it, once a day. I figure that's enough even if it is a diamond.
I guess there's not much to update here anymore, except for when we go in for a pediatric GI appointment next week. I'm interested to see what his inflammatory markers are in his blood work.