Newbie trying to navigate MC (CC)

[nclarkramirez]

Hello!

First post to the forum! I apologize, in advance, if this is long and confusing!!!

Newly diagnosed CC in April (2022). Other GI diagnoses include GERD, hiatal hernia, lactose intolerance, Celiac (genetic testing and symptoms), and Barrett’s, and I had SIBO a number of times. Was IBS-C for most of my life until the D started. Right before my CC diagnosis, GI doc assumed I had SIBO again.

I have been GF and DF for over 14 years (with the exception of grass-fed whey isolate protein which I also discontinued over a year ago).

I am a personal trainer, Wellcoaches health coach, nutrition coach, adjunct English professor, a grad student finishing up a degree in Human Nutrition & Functional Medicine, and also working on my IFM functional medicine practitioner certification. I’ve been into health and fitness for most of my adult life and was a bodybuilder before doing CrossFit and now do a little of everything. I am normally muscular and workout 5-6x/week and eat extremely healthy. I also have Ehlers Danlos Syndrome and really need to keep my muscle to help with that condition. My EDS and GI issues have gotten a LOT worse in the past few years—I am 44 now so I assume age has something to do with it! So, all that being said, it’s been an incredibly disheartening and difficult to accept this CC diagnosis. I went on a lowFODMAP diet when I thought I had SIBO again literally right around the time of my diagnosis and it put me in remission for about 6-8 weeks and I thought I was good!

Then, kind of suddenly, after a lot of stress (trigger), the WD started again but would turn to ribbons and go back and forth but was always only in the morning, never more than 2-4 times. Then, all that changed in the past month.

The past month has been pretty terrible as a whole. Until a week ago, the only bowel movements have been WD and what I call water with clay looking sediment and gas. Had not had any formed stool. I went away on vacation with my partner and had an awful experience traveling. 5 Imodium did not stop the D. The whole time we were away, I was on the toilet or trying to cook plain chicken and rice. We don’t go out to eat as a rule anyway, because my GF sensitivity is so serious. I never eat out, I have already been on a restricted diet for years, and am looked at as “healthy” but I’m the furthest thing from it right now and it’s scaring the heck out of me. I’ve dropped 8-10 lbs that I didn’t need to lose in the past 2 weeks. I take vitamin D regularly and when my levels were tested recently they were on the higher end (63 I think) so I know that’s good. I have also taken magnesium every night for years. In addition, I take B complex, Beta-carotene, Zinc and other vitamins, most of which I have stopped with suggestions from this board to not be taking too many things. I do take digestive enzymes and DGL with every meal.

I did a large food sensitivity panel with US Biotek a few months ago (blood test) and didn’t have high IGG to pretty much any foods and had high IGG4 to eggs, egg whites which usually means tolerance.

In the past few weeks, I’ve switched to white rice, white rice noodles, almond milk (with 2 ingredients), chicken breast, ground turkey, baked plantain, bananas, coconut flour, little mushy zucchini, some red potatoes. I’m at 3/4 decaf/ w/splash reg coffee and put plain collagen peptides in it. And it’s low-acid, organic coffee….moving toward all decaf. I am having hardly any fats and hungry all the time! I eat about 4-5 small meals a day but am not getting enough protein for my body. I only eat chicken breast and ground turkey and it gets very tiring. Having baked plantain mixed in with it helps.

I have been eating like this for about 2-3 weeks. Prior to that week I was also eating almond butter on rice cakes 1-2 times a day, tiny bits of jelly (like 5g), rice rollers, egg whites every morning, GF DF SF bread (Canyon Ranch White -low Fodmap), green beans (cooked well), baby spinach (in egg whites), and Sunwarrior Vegan Protein, a little flaxseed and cacao nibs in smoothie both (stopped those weeks ago), Quinn grain-free pretzels, green tea, cold brew coffee on occasion, plantain chips (in coconut oil) and and a very small amount of some grain gf, sf, vegan cookie like things. So, all of those things are gone now. And it's very very sad for me! I miss my little “treats” that wouldn’t be a treat for most people!

I’m frustrated because I had already been GF,DF for so long and eating truly well for many, many years. I know stress is likely what pushed things over the edge for me.

I also did a 3 day, GI MAP360 stool test at the beginning of July and these were the highlights:

Lactoferrin -- Very high @ 118 (Last test in January was only 11.3ug/ml)
Calprotectin --- @ 111 (last test in January was only 14ug.g)
Secretory IgA -- very low @ 4.1 (last test in January was 122 mg/dl)
Elastase -- 384 ug/g
Also show high levels of yeast and citrobacter freundii complex

Considering my oral thrush that keeps coming back and yeast in my stool test, my GI doc put me on a 10 day course of Diflucan. I have 3 more days and it “may” finally be helping my oral thrush at least because the troches were not working. Seeing my SIgA so low, I don’t think an Entero lab test would help.

When I was first diagnosed, I didn't take any meds and Low FODMAP had me in remission. Now, I have been on budesonide for over 5 weeks now and it did not seem to be a miracle drug like people said at first. I am also on rabeprozole (PPI) for the Barrett’s which I cannot get off of until the Barrett’s is healed which I have been working to do. I did research and found the PPI might be making the Budesonide ineffective so started taking the Budesonide first thing in the morning about a week and a half ago and waiting to take PPI until at least 3-5 hours later. I actually think that is making a huge difference. I’m down to 2 WD, MC Mud type in the morning now which is a big change and guessing the Budesonide is working. I think the Diflucan may be helping as well since yeast can be a trigger.

GI doc also suggested colestipol tabs and low dose Creon (I tried Zenpep before with awful results). Not even sure what to do anymore! (I haven’t taken either)

My energy seems to be coming back a little but still hungry all the time and get tired quite easily. I want to add back in some foods like rice cakes and almond butter, but if I’m still have D in the morning, I assume I am still inflamed and shouldn’t do that?? I did add in a little rice chex and plantain chips in coconut oil and nothing seemed to get worse. I made some minimal ingredient vegan almond flour cookies last night to see if I could test almond flour. Is it bad to start testing different foods before the diarrhea completely stops? Or ok to assume something is ok if it doesn’t get worse? I feel like maybe I should start going to 6mg of budesonide but is that not advised until having “normal” bowel movements? Sorry for the long post and so many questions. Thanks to anyone who read this much!


Prescription Meds: Budesonide 9mg, Aciphex (generic), Wellbutrin, Vyvanse, Lorazepam, testosterone gel (small amount every other day), Diflucan
Supps I am currently taking: With every meal or snack — DGL Plus & Digestive Enzyme (DigestGold)
Other supplements I’m currently taking:
Was on Vital Nutrients Triple Mag 250mg and switched to Chelated Mag Glycinate (200mg), B Complex, Zinc Carnosine, L-Methylfolate 15mg, Vitamin D 5000, SBI Protect capsules (4 per day so far).

Was doing Biocidin 5 drops 2x/day + GI Detox 1x/day which always helped with SIBO but stopped that 3 weeks ago for fear I am possibly taking too many things that might be interacting with each other.

[Gabes-Apg]

welcome
and sympathies that you had to find us.


You are not the first 'health and fitness' professional that has joined the group and basically had to embrace a total reset regarding life with MC dx.

I had been GF and DF for over 10 years before my MC diagnosis.
for me I react worse to Soy than Gluten this meant I had eradicate all soy / vegetable oil based items. not just food wise but also make up and moisturisers etc
Stress is also my other major trigger (and still is 12 + years post Dx)

my suggestion.
spend some time reading the various posts aimed at new people, guidelines to recovery

I would stop the digestive enzymes. and other things for SIBO etc. While gut is inflamed you won't be absorbing them and the gut can not heal while there is ongoing inflammation

Re the thrush - coconut oil might be a good option for you

DO NOT test foods whilst you have D / inflammation there is no way to gauge if that food is good or bad
the idea of the stage one eating plan etc is to find your 'SAFE' basics. get stability with those food items, reduce the inflammation and get some good healing happening.

If you are hungry - eat protein. every snack and meal have some protein

avoid things like rice Chex, they still have trace amounts of gluten and do not offer nutritional benefit. Safe protein and cooked veggies will be better snack option!

[tex]

Hello,

Welcome to the Group. Gabes' response is right on target, so I'll just add a few observations. Reading your post brought back memories of the bad old days, when I used to have the same symptoms that you've described. But you have a problem that I didn't have — I wasn't taking a PPI. In this day and age, with all the published medical research proving their iatrogenic qualities, I find it hard to believe that they're still being prescribed by anyone. In my opinion, anyone who prescribes PPIs either doesn't understand what they do to patients' digestive systems, or doesn't care. If I had Barrett's, I would be trying to control it with H2 antihistamines, definitely not PPIs. Besides, medical research proves that PPIs actually cause many of the same symptoms that they're prescribed to treat.

To be honest I'm not sure whether it's even possible to control MC symptoms while taking a PPI. Frankly, I doubt it. I'm only guessing, of course, but at this point, your digestive system appears to be so inflamed, that your immune system is probably reacting to even chicken and rice. But the first-order business, since not even budesonide can overcome it, is to wean off the PPIs, if you ever hope to regain control of your health. This is just my opinion, of course, and I'm sure your doctors would disagree with me, but please remember that they're the ones who got you into this mess. I wish you had come here sooner, because your journey back to good health may be quite a challenge, at this point. That said, it's certainly doable, if you're willing to do what's necessary to suppress the inflammation.

Regarding taking budesonide, yes, the most effective way (and the proper way) to take budesonide (or any corticosteroid) is to take the full dose, all at once, first thing in the morning, because this is the way the body normally handles its cortisol production.

Again, welcome aboard, and please feel free to ask anything.

Tex

[nclarkramirez]

Thank you to both Gabes and Tex for taking the time to read my story and respond. I really appreciate your feedback.

I have access to university databases and have a number of research articles on how PPIs increase risk of IBD and MC. I am seeing a different GI doc who is also a functional medicine practitioner and instructor for IFM on August 5th and am hoping she will help me get off of PPIs.I have IFM protocols of how to do it but I wanted a second opinion on my Barrett's and such. It's funny because I do not fit the "mold" of someone who needs PPI's and is at risk for Barrett's as lifestyle factors such as not smoking, losing weight, etc will all decrease the risk. Everything for me stems from anxiety and being in an emotionally toxic and abusive relationship. I have been saying for YEARS that the PPIs are causing all my problems (along with stress).

I am currently making serious lifestyle changes. This last month really hit me hard mentally and I know I can't keep up the pace I've been attempting to keep up with. I am sleeping more, started doing some meditation and have plans to do more, changed my style of working out to be less stressful on my body, and am actually going to change my position at my current job and take a pay cut to reduce stress. I am determined to heal.

I posted on the board yesterday and this morning had my first non-D bowel movement. Soft but definite edges and not WD. Small wins!

[Gabes-Apg]

great news the poop has improved!

regarding heartburn /digestion issues

1. early in my MC diagnosis journey I was diagnosed with hiatus hernia, quite bad gastro wanted to do procedures etc. thanks to the low inflammation lifestyle and diet, and getting onto the right nutrients this did resolve and I have never had issue again (at the time I could not bend over to tie shoe laces without pain and various other side effects)

2. stabilising bile acid - magnesium and B6 are key to having balanced bile acid once I fixed these deficiencies I have had minimal reflux issues. Anytime I get mild reflux issues i know it is my body telling me I need a bit more B6 and magnesium

you will not regret the job changes / lifestyle changes to reduce stress. I did the same.
Even now that I am in a good state of remission per say, to work full time I need to have minimum of 8 hours sleep a night (I am 52) good quality sleep is essential for long term wellness, so it is good to hear you acknowledge the sleep and meditation as part of your focus.

take care, and a good motto is progress not perfection!

[nclarkramirez]

Hello Everyone!

Just wanted to post an update....and vent a little... I'm about 6 months in to the very restricted diet and have had a number of ups and downs....currently on a down and feeling pretty sad and alone. I have worked so hard and feel like I'm back tracking again.

I have been completely off PPIs since Sept 1. It was very difficult to do. I have been doing pretty well with just having moderate WD/MC mud 1-2x/day in the morning only. No stomach pains throughout the day, etc. I could deal with that! I went down to 6mg of budesonide and was doing well. I know I was not completely healed but again, I felt like I was doing much better...I went down on the budesonide because I had been on 9mg for 4-5 months....

Recently, I met with a functional gastro doc and we discussed an ongoing oral thrush issue that comes and goes ever since I got very stressed when my father got sick a few years ago. My stool test had shown yeast so the doctor suggested nystatin to get rid of the likely candida overgrowth once and for all. She thought that might be the infection holding me back from full remission since it appeared I was doing better. I started 1/2 pill of nystatin 3x/day and within 2-3 days, I had a NORMAL bowel movement. I was shocked. I ended up having normal, maybe not even full, bowel movements for a week. Half way into the week, I actually went down on my budesonide to 3mg because it felt like I was getting constipated and I got worried! I can't express the happiness I felt when I thought I might be entering into a remission state. I thought we had found the final answer! We had also discussed me trying LDN after getting rid of the yeast overgrowth.

Anyway, long story short, my nystatin treatment included a week of 1/2 pill 3x/day, 1 week of 1 pill 3x/day, and 30 days of 2pills 3x/day. Once I got to the 2 pills, 3x/day, the diarrhea came back with avengence! After 3 days, I couldn't deal and went back to 1 pill 3x/day. Now it's at least 1.5 weeks later and I'm still having WD/mud about 5x day including in the afternoon, in the evening, and waking me up in the middle of the night. I now just yearn for the 1-2 morning WD that I had prior to taking the candida medication! At least then I didn't have to worry about going places during the day and worrying about things.

I have had more gurgling and stomach pains daily which I had not had in months as well. I started back on 6mg of budesonide but it hasn't made a difference. Not sure if I should jump back up to 9mg again...I am also still taking an H2 blocker which I used to get off the PPIs...not sure if that could be contributing to my issues and if I should try getting off of that?

For food, I've kept the same diet for months (tons of ground turkey, white rice, white rice noodles, well cooked zucchini, cooked plantains, banana, collagen protein powder, plantain chips (in coconut oil), some almond and coconut milk, almond and coconut flour, little bits of maple syrup for "muffins" I make and rice pudding, tiny amounts of dairy free, gf dark chocolate or cacao powder)....I had added in green beans but took those out again.

At Thanksgiving, I did try adding in a different kind of turkey breast from whole foods and a tablespoon of cranberry sauce along with a GF DF small homemade cornbread muffin. That didn't go over well but I assumed it was the muffin.

Anyway, I'm trying to decide if I should go back up to 9mg for budesonide. The fact that I was on it so long and still had diarrhea made me think that perhaps it wasn't working but I have no idea. And wondering if I should try to get off H2 blockers....
I may try the colestipol to see if that helps. I have 2 bottles but only tried 1 pill at night 2 days in a row and saw no difference nad don't remember why I gave up after that.
Ugh. Thanks for listening!!

[tex]

I'm sorry to see that you've regressed in your symptoms. Please be aware that corticosteroids typically become less effective each time a treatment is stopped and then restarted. Normally, restarting a treatment with less than a full dose either provides no benefits, or is very slow to provide any benefits. Ideally. corticosteroid treatments should always be started with a full-dose, and then tapered from there, as needed.

Regarding H2 blockers, a few of us do react to them, but not a big percentage of us. I hope you can discover what's causing the problem, and eliminate it.

Tex

[nclarkramirez]

Thank you SO Much for your response, Tex.
I have read and learned from you about problems with the stopping/starting the budesonide but I was hoping that since I was still taking 3mg, that I was not technically "stopped." I am probably wrong though. I will try to put the dose back to 9mg and hope for the best! I hope I can figure out what's bothering me too. It seems weird and sudden ...but that's the nature of this disease I guess...Thanks for your response!

[tex]

You're correct — Even taking as little as one 3 mg capsule every fifth or sixth day appears to avoid the issue of stopping the treatment. Even so, it's doubtful that boosting the dose to 6 mg per day will be sufficient to get a normal response from budesonide. If I were in your position, and wanted to use budesonide, I would boost the treatment to 9 mg per day, to see if I could get a response, and then taper from there, as indicated by your condition.

Tex

[brandy]

Hi NC,

Welcome,

Mom has had about 5 rounds of oral thrush in the last 2 years. It is painful.

Recommend the following:

1. Run a vaporizor in your bedroom at night and your house in the day to put more moisture in your bedroom when you are sleeping.

2. We've been using something called biotene spray and biotene gel in Mom's mouth. Use the spray before bed or
run some of the gel around your mouth before bed. This will help hold moisture in the mouth and prevent the oral thrush from taking hold.

In general moisture in the air and in the mouth will help prevent the oral thrush.

Get the scrip for diflucan when you have symptoms.