Running up the white flag

[MomLady]

Hi there,

I am checking in after a long absence and hoping for some good advice, or at least a virtual shoulder to cry on. I last posted in October, and here is a recap of where I was at, to spare rewriting it ("Keep on keepin' on, or try something new?"):

viewtopic.php?f=2&t=25099&p=205008&hili ... cc#p205008

I began the restricted diet in July 2020. The update is this: shortly after I posted, in mid-October, I began about 6 weeks of serious improvement. I was getting pretty reliable 4’s, some 5’s, and going to the bathroom about 3 times a day, rather than 10. I was about to post something along the lines of, “Hooray, diet finally worked, I can see the light at the end of the tunnel.” But then by the end of November, slowly things got worse. I am now having a lot of 6’s and 7’s and going to the bathroom frequently, mainly in the morning around my first meal (about 8+ times a day). Throughout all of this I generally don’t have pain or fatigue or anything, but I do have a lot of bloating. Despite losing 12 lbs on this diet, I have a persistent abdominal bulge that looks like I am 3+ month pregnant. Not a good look at 51 and otherwise reasonably fit.

I have religiously tracked my food intake and BM output on a spreadsheet since September. My IT husband has made some cool line graphs which confirm what I suspected, namely, there seems to be NO correlation between my restricted diet and my BM quality/frequency. (Side note, if it would be useful for anyone to see, I am happy to post this data “For Science,” but I was unsure how to do that). I can list out the foods I eat in another post, if that is helpful. What is maddening is that it’s been pretty much the same food, the same stress (as far as I can tell – there’s plenty to go around these days!) during the “good period” as the “now bad period.” This is why I doubt my problem now is a “bad” food I am eating. Had I had my period of improvement while on cholestyramine, I would have sworn the drug was why I improved. (I had stopped taking it after 2 weeks when I had terrible, mysterious gas-like pain attack. Not sure if it was the drug or not).

I really don’t know what to do now. As I see it, my options are:
1) Persist on the “food alone will heal me” path, and go super hard core, like only 3 foods, e.g. plain lamb, black tea, sweet potato. For how long? I honestly don’t know if I can summon more willpower to do this for much longer.
2) Retry cholestyramine and see how that goes. Maybe I will get another bad gas attack and then I’ll know I can’t do this drug. Or maybe I will slowly improve.
3) Find a GI doc and get on budesonide. Stay on restricted diet of course, and hope budesonide helps me reset.

Thanks in advance…I am running up the white flag here. This disease has kicked my butt.

[jessica329]

When I was first diagnosed and going 20x a day, I found that I needed a combo of budesonide and diet change. 2 weeks before I weaned off budesonide, I started on Lialda. Then, after a few months on lialda, I weaned off that and controlled the disease through diet. In my opinion, I think my body was so inflamed, that I needed the drugs temporarily to calm things down. But, foods/drinks that are a no-no for me will still send me into a flare, almost 9 years later.

[MomLady]

Thanks for sharing that info - how long were you on budesonide? I've not read a ton about that on this board (yet) but am generally aware that people are less likely to relapse if they taper very very slowly off the budesonide. Did you taper, then do Lialda, or go straight from one to the next?

[jessica329]

I was on budesonide for 3 months. Tapered the last 2 weeks. But I started Lialda the first day that I started to taper the budesonide, because it takes that long for Lialda to build in your system and be fully effective. Stayed on Lialda for 3 months and then tapered off Lialda.

[MomLady]

Thank you! That is helpful to know. Some future day, post-pandemic, I hope to have enough control over MC that I can travel a bit again, go to music camp, all those fun things I used to do. I suppose the bright side of staying home during a pandemic is ready toilet access!

[tex]

Jessica's suggestions would certainly make life easier, but there's a possibility that you still might need to track down the reason why your condition deteriorated. That's a common pattern as patients purge the gluten from their systems. About a month to six weeks after stopping gluten, the body begins to look for additional food sensitivities. But you're already avoiding most or all of them. Did you change anything before the reversal came? Any supplements, personal care items, etc. Did any additional stress enter your life?

Frankly, the bloating reminds me strongly of cross-contamination in your diet with gluten. Is there a bag of wheat flour anywhere in the house? If so, does anyone use it? It's impossible to open a bag of flour without having it drift all over the house, contaminating everything.

If there's no additional possibility, and you're sure that your diet is squeaky clean, then as Jessica suggested, sometimes we just need something to kick=start our digestive system — a few members have used a short course of prednisone to do that, when budesonide wouldn't do it.

Tex

[brandy]

Hi Mom,

We're not anti drug on here. Sometimes one just needs a bit of help.

I've done all three at separate times: budesonide, cholestyramine, and diet only.

budesonide:
started working within 48 hours, constipation in 10 days
was on 4.5 months
the last 10 weeks was a slow taper (last 4 weeks I think I took one pill every 4 days)
getting and staying off requires strict attention to diet
when I started budesonide I was actually doing pretty well--I had daily soft serve consistency. I went on
budesonide due to pressure from my boss and best friends to get on meds.

cholestyramine
started working within 48 hours
I was already good with diet so I found I needed only a small amount
no taper required to stop
was on this about 30 days

diet only
After struggling for 10 months Once I got serious I had good results in about 10 days. It took me eliminating oral supplements shifting to the 3 food diet. I don't think diet only would have worked if I kept taking oral supplements.

Overall cholestyramine is less of a committment. It is easy on and easy on. My pcp prescribed it.

[MomLady]

Hi Tex and Brandy,

Thanks for your replies. Tex, I DEFINITELY want to know what halted my period of improvement rather than just go for meds first. (My mom and her sister have MC and they think I am crazy not to be using Entocort. I suppose if I were in my 80’s I might just go for drugs too). It’s a mystery to me – as far as I can tell, no new foods, personal products, etc. to change the improvement. The stressors I have had in my life have remained fairly constant, though obviously as my MC gets worse, it is hard not to feel down about that. I went GF (and DF, SF, chicken egg free) in July 2020, and got rid of loose wheat flour not long after that. There is still gluten in the house – the other 4 members of my family have things that generate crumbs, but I clean pretty well and have my own prep stuff (e.g. cutting board, spatula, that kind of thing) that is GF. It is confusing enough now that I wonder what even counts as a “safe” food for me anymore. I would think I would count any of the foods I had during my 6 week “good” period as “safe.” I could list out the foods but I don’t want to make this post unbearably long.

Brandy – thanks for sharing your experiences with various approaches. When you say 3 foods, I assume you mean you did only 3 plain foods for 10 days? I could probably psych up for one last rally of that. Lamb, sweet potato, black tea or coffee, perhaps. My oral supplements are Mercola Vit D spray. My magnesium is topical. I also take Flonase. When you went off cholestyramine after 30 days, was that after seeing stool improvement for a while, I imagine?

It is pretty discouraging to think that my efforts to improve things have only made things worse. In July 2020 I “got serious” about trying to stop the very gradual decline I was seeing with my toileting, so I did the Enterolab testing, read the book, etc. I had crummy Enterolab results, showing I reacted to everything, it seemed. Before changing diet, I was getting a few soft-serves in the morning, and that was it. That would be way better than where I am now. I’m not saying this in the spirit of accusation, more in the spirit of utter confusion.

- Janet

[brandy]

Stress can have a big role in our disease. We've had the pandemic this year, political issues, family issues, weather etc.

I really loved the cholestyramine. I had a rare side effect that you can get with almost any scrip towards the end of usage (one month) my throat started swelling so sadly I had to discontinue it. I think this is a pretty rare side effect
and no one on here has ever mentioned as a side effect.

When I talked to my PCP he had no problem prescribing it. He prescribes a lot of it for those with gut issues.

Re: the few foods

1. your sprays/topicals sound fine. I switched to epsom salt baths during my few foods regimen (stopped oral mag)
2. Yes, pick something you like, is filling and that you feel is safe. The sweet potato and lamb sounds fine.
I think I did chicken and rice.

Oral anti-histamines (OTC)--have you tried them? You might try them for 2-3 weeks to see if you get some improvement. I used them when I was getting off of budesonide.

[brandy]

Interesting that your Mom and sister both have MC. Do they take a maintenance dose of budesonide and eat whatever?
Are they maintaining with diet only?

We do have some members who stick to diet and a tiny maintenance dose of budesonide in order to get quality of life.

[brandy]

I forgot to mention that I never eliminated tea and I think most people don't have to eliminate coffee.

[HockeyMom]

Mom and sister both have MC? Do you have Scandinavian genes by chance?

Laine

[MomLady]

Hi Brandy and Laine,

I doublechecked my notes and realized I misspoke. My maternal aunt, who is 83, got dx'd with LC about 8 months ago. I haven't talked to her about her diet lately but heard she was going on Entocort and was doing ok. My mom is 84, and got dx'd with MC a pretty long time ago, maybe 15 years? She is also on Entocort. She has such a huge host of health problems I never wanted to count myself like her, or think, "Well, guess I'm likely to get that, too." She has had CPH (chronic paroxysmal hemicrania, a rare, chronic severe headache disease) since I was born, with some asthma and migraines (I think - the asthma went away - ?). Later problems included fibromyalgia. The terrible place she got to several years ago was a pinch between two bad conditions - the headache medicine (Indocin, sometimes prednisone) was really hard on her gut, to the point of risking a GI bleed, but not enough headache medicine put her in terrible headache pain for weeks. My mom avoids fiber like raw salad, only eats a little green bean, etc. but is a lover of gluten and dairy for sure. I only have one sibling, a younger brother, and he seems perfectly fine.

Our heritage is largely Scottish, English, and Czechoslovakian/Austrian (my maternal grandfather was - wait for it - a BAKER, just like his father who'd trained in Vienna). I'm a pale skinned, blue-eyed, dark blonde that fit in pretty well in Germany and Copenhagen as a tourist, at least :-) Laine, I remember you thought your mom's Swedish genes did ya wrong for BAM.

Laine, I also recall you used Betaine HCl and some other digestive enzymes (?) later on in conjunction with cholestyramine. I confess to being pretty uneducated on this topic. I have this vague notion of cholestyramine soaking up the excess bile acid that could be causing irritation, but then why do you add in Betaine HCl, another acid? Maybe the answer is on the board already, and I just haven't looked for it hard enough.

I think I'm about to give cholestyramine another go, and see what happens.

thanks a bunch,
Janet

[HockeyMom]

You need stomach acid to help digest your food. Thus the Betaine HCl... I read about it here first but didn’t think much of it. I actually googled it at some point and did a little more research. There was a laundry list of symptoms of not producing enough stomach acid to digest your food (proteins mostly)....ANXIETY being one of them! What? Huh?

So there was some simple little test you could do to sort see if you may not produce enough stomach acid. I think it was like get up in the morning and on an empty stomach drink so much water with a teaspoon of baking soda in it. Normal people should get some sort of reaction like like burpy or belching after so much time. I had absolutely no reaction. So I went and bought some Betaine HCl and started taking it with my meals...which at that time were ALL protein heavy . I was taking 5 of those capsules with every meal for quite awhile. I noticed my gurgling guts got better pretty quickly...ya, this was a needed addition to the cholestyramine . Digestive enzymes were sort of the same deal... I obviously needed this stuff! Life was much better with them!

Anyway, I haven’t taken the digestive enzymes for awhile, and I only take 1 capsule of Betaine HCl with meals anymore. Read up on it ...interesting stuff. Magnesium definitely is tied to anxiety, but I think the Betaine HCl also helped. As I healed up I was able to cut down on this stuff.

Ok, enough rambling for the evening. Message me if you want the full dissertation

Laine

[Pkw]

Hi everyone, I took the baking soda test and never burped so, last night ate 8 ounces of protein Duck And halfway between took BetaineHCL. Within a half hour I was running to the bathroom. Could it be that I don’t really need that BetaineHCL. Or would it be a reaction to the duck? Today has been more miserable but as the day wore on I’m feeling a little better. Did go back to Imodium and Pepto to help calm things down.