Tex? Gabes? Anyone! Tell me what to do next!?!

[Sue777]

Most of you know me, for those of you who don't, diagnosed with CC about 15 years ago (but had irritable bowel all my life). I've tried all the medications except 6MP (which my doc has been urging me to try for about a year now). The one that consistently works is Budesonide but I HATE taking it. For the past 5 years or so I've been going on and off of it, slowly of course. I've tried eating dairy free, Vegan, gluten-free, and keto. I think the way of eating that works best for me is dairy-free, gluten-free and keto but that's a tough combination so I've been adding dairy back in and I THOUGHT I was doing OK with that. It was working for the past two months but now I feel myself heading back into a major flare. (I've been off Budesonide for about a month now but was only on 3 pills a WEEK for the month before that.)

I'm so defeated and depressed - a feeling I know we all feel or have felt. I try to do everything right and it still ends up wrong. I promised myself that if and when this remission ended I would try the 6MP (because I hate Budesonide) but apparently I may have to take both to get into remission and then wean off the Budesonide. Ggggrrrr. So that will throw off my TSH levels as it always does, and create another separate nightmare.

I really and truly am lost and don't know what direction to take. The way I see it, my choices are:

1. Start the Budesonide again and also start the 6MP. It's an approach I've never tried so part of me thinks it's time. I won't know until I try.

2. Start the Budesonide again without 6MP since I know it works and hopefully get on and off quickly.

3. Don't take any meds and try to heal my gut with diet only, but that one really frustrates and scares me because not only will that take a while (and I am very busy at the office and also have some cross-country trips planned) but I also really like the keto way of eating but it's pretty hard to do without eggs or dairy.

Tex, I know you aren't a fan of 6MP and Gabes, I know you're an advocate for ketogenic eating, so I'm leaning towards adding back in a low dose of Entocort to see if that stops this flare (which hasn't gotten full blown yet) and continuing the keto way of eating but trying for a lot less dairy.

Oh, Happy New Year everyone. This will be the year we all find our solutions and answers, right????
Sue

[tex]

Hi Sue,

I can feel your frustration. It's possible that the added stress at the office (maybe combined with the added stress of the Holidays) is enough to tip the balance.

I note one thing — 8 weeks (after stopping budesonide) is the apparent threshold at which we can feel confident that we have successfully weaned off the med. IOW, all budesonide-associated relapses seem to occur within the 8-week time frame following the last use of budesonide. After 8 weeks without a relapse, we're home free. Or it could mean that (again maybe because of the stress involved in your regular schedule) you may need the extra inflammation suppression of a small maintenance dose of budesonide.

Have you ever tried Uceris? Unfortunately it's not available in small doses. But like most corticosteroids, it's effect lasts a while, so taking one capsule of Uceris every third day, for example, should simulate taking 1 capsule of conventional budesonide every day, etc. The benefit of Uceris (if it works for you) is that it should not affect your thyroid, because it does not become activated until it reaches approximately the Sigmoid colon. So none of it is systemically absorbed. The downside of Uceris is that because of this late activation it might not be effective (theoretically, at least), because MC usually affects not only the entire colon, but also at least the terminal ileum. Uceris is designed for UC, but most MC patients who have tried it have had good results. You would have to figure out as you went along what the optimal dosing rate would need to be for your situation, but that's often the case with MC.

At least that's one option to consider.

Tex

[Sue777]

Thanks, Tex, for always being compassionate and understanding and always coming back with a response and thought/suggestions. I have been crying a lot for the past few hours and just allowing myself a pity party but soon will be back to taking assertive action and control of my health.

Never tried Uceris, but your suggestion that I just might need a low dose maintenance drug for life makes me think that perhaps I should get to and STAY ON a low dose of Budesonide again. I took only one a day from September 1 through November 1 and when that made me constipated I went down to 3 a week. I should have known better and STAYED THERE but I was so anxious to see if gluten free and keto diet had "cured" me I flirted with danger and gave up the steroids totally.

My priorities and what I'm really hoping and striving for are:
1. CONSISTENCY of whatever it is I'm taking or eating so that I can find a regimen that works and stay with it for life.
2. A regimen that affords me a somewhat "normal" lifestyle where I can leave the house and be functional.
3. The least amount of medication possible.

So rather than experimenting with 6MP (which I really don't want to do) and rather than trying yet another new drug (Uceris) I should probably do one of two things:

1. Live on Imodium for a few days while I go back to totally dairy free and see if I can see halt this flare without drugs.

2. Add back a small amount of Budesonide (since I'm not in a severe flare yet) and speed up the healing with that (and go back to dairy free).

Thanks for helping me think outloud - I know my GI is going to hate me staying on a low dose of Budesonide - he would prefer I get on and stay on 6MP for life but it's MY life, not his.
Sue

[tex]

I trust you're aware that Uceris is slow-release budesonide.

IMO long-term budesonide is much safer for your long-term health than any chemotheraphy or Anti-TNF drug would be.

The dairy products could easily be your problem. If you produce antibodies against casein, you might be able to tolerate some dairy products sometimes, but you might not be able to tolerate them at all times (especially when you're in a flare).

Tex

[Sue777]

Nope, I did NOT know it was a slow-release budesonide! I thought it was in the same family but the difference being it was dissolved/released in a different part of the intestinal tract, kinda like Asacol used to not get dispersed until it reached a certain point in the system. So perhaps I DO need to try a new drug....hmmmmm.....

But what would the advantage be to trying Uceris over going on low dose Entocort? The fact that, if Uceris worked, it would mess with my systemic issues less?

I think you're right about the dairy. I tried small amounts and had no issue so then I continued to add and use them (especially since I'm on a ketogenic diet) and THOUGHT I was getting away with it. I assumed since I gave up gluten I was getting away with other things now but I guess I was on borrowed time.

Going off the dairy, again, and that means I'll get rid of this congested head and sinuses again, too.
Thanks!
Sue

[Gabes-Apg]

based on the conversations above my suggestions...

Stop the dairy.
are you taking Vit D3 and magnesium?
are you taking active B's?

did you start anti-histamines as you did the taper off the entocort?

[JFR]

I eat keto and I am dairy and egg free (as well as gluten of course and soy and chicken). It's only hard to do if you tell yourself it is hard. If instead you tell yourself that all you have to do is cut out dairy and eggs and you can be rid of these awful symptoms it becomes a no brainer. I've been doing this for about 8 years now, no dairy and no eggs (except the one unsuccessful attempt to eat duck eggs). It might feel likes it's too hard and not fair and not what you want but it is what it is and you don't get to negotiate with your body. I'm sure I sound like a hard ass to you but really, if you can change your attitude about a dairy and egg free keto diet you might actually get better and be able to go on with your life. I tell myself how lucky I am to be able to heal my body by just sticking to these dietary changes. It's so much better than living in the bathroom.

Jean

[Sue777]

based on the conversations above my suggestions...

Stop the dairy.
are you taking Vit D3 and magnesium?
are you taking active B's?

did you start anti-histamines as you did the taper off the entocort?

*Stopping dairy.
*Yes, taking vitamin D3 and magnesium (although I'm going to cool it with the magnesium until I get this flare under control).
*I take a daily multi-vitamin and used to take B12 when I was vegan but I swear it made me anxious. So now I think I'm getting enough B12 in all the meat and in the multi.
*No, anti-histamines never seemed to make a difference for me so I didn't start them when coming off entocort.
Sue

[tex]

Sue,

I'm sorry if I misled you about the Uceris. I used the term "slow-release" simply because Uceris does not become active as quickly as regular budesonide. IOW it activates farther down in the digestive tract. I didn't mean to imply that some of it activates at a later time. It might, but that's not the feature that makes it unique. The fact that none of it activates at all until after it is past the cecum (and the middle of the colon) means that it is unique among the corticosteroids because it can not cause any systemic side effects. Supposedly, it can be stopped cold turkey after any length of use without any withdrawal effects (because it cannot affect the adrenals like the other corticosteroids). And it shouldn't affect your thyroid treatment, either.

But you may not need any form of budesonide anyway if you cut dairy out of your diet. At one time I thought that I could tolerate dairy because I didn't seem to have any digestive symptoms after eating it. But the inflammation eventually caught up with me and I had to cut it (dairy) out of my diet, because I produce antibodies to casein.

Tex

[Gabes-Apg]

how much Vit D3 are you taking?
swap across to topical magnesium (instead of oral) if you are worried about oral magnesium impacting stools

B wise, inactive forms of B vitamins can make you anxoius.
we have found that MC'ers do better with active forms of B6, B9, B12.
i doubt if your multi would have enough dosage of the active forms that your body needs now.

[Sue777]

Thanks for the clarification, Tex. Here's hoping I won't have to go on any of the corticosteroids, but if I do, I think I'll ask to try Uceris. Can't hurt and if it works as well as Entocort then that will be a victory and will save me from more TSH rollercoasters. And I will be eternally grateful to you, but hoping I don't need to find out.

I just went and looked at my Enterolab results and cows milk is a 10 (so not terribly reactive but I guess it would have a cumulative affect if I kept pushing my luck, as I did) and chicken egg was only a 6. Can I take that to mean I can give up dairy but keep the eggs? I don't eat them every day but would like to have them to fall back on as a quick and easy meal when I need something fast.

Thanks, Gabe... I do have several forms of topical magnesium and will pull those back out, for now. And I will start looking for active B's....thanks for the advice.
Sue

[Sue777]

I eat keto and I am dairy and egg free (as well as gluten of course and soy and chicken). It's only hard to do if you tell yourself it is hard. If instead you tell yourself that all you have to do is cut out dairy and eggs and you can be rid of these awful symptoms it becomes a no brainer. I've been doing this for about 8 years now, no dairy and no eggs (except the one unsuccessful attempt to eat duck eggs). It might feel likes it's too hard and not fair and not what you want but it is what it is and you don't get to negotiate with your body. I'm sure I sound like a hard ass to you but really, if you can change your attitude about a dairy and egg free keto diet you might actually get better and be able to go on with your life. I tell myself how lucky I am to be able to heal my body by just sticking to these dietary changes. It's so much better than living in the bathroom.

Jean

Wow, Jean, you really let me have it - thanks for that! LOL As I was having my meltdown this morning I kept telling hubby that I KNOW it could be so much worse and that I should be grateful that I don't have it as bad as some other people, but it doesn't mean I don't break once in a while.

Yes, I will adapt to more restrictions, but I fought the "gluten free" for over 10 years before I finally accepted that one.... give me just a little more time to accept that dairy is forever off the table, too.

Thanks for the butt-kicking and pep-talk.
Sue

[Gabes-Apg]

eggs should be ok with that result
Please keep in mind if the chickens are fed lots of Wheat or Soy or Corn - and if Soy and Corn were high on your test results then you may get secondary reaction to eggs because of what the chickens were fed.

[Sue777]

eggs should be ok with that result
Please keep in mind if the chickens are fed lots of Wheat or Soy or Corn - and if Soy and Corn were high on your test results then you may get secondary reaction to eggs because of what the chickens were fed.

Thanks for that, Gabes. I was eating Egglands Best and then saw that their chickens were fed a soy diet so am now buying free-range eggs. I know that doesn't guarantee that they aren't eating soy or wheat but I'm not sure how or where to get eggs that WOULD guarantee that (I've thought about raising my own but that could be challenging with all the dog rescue we do and all the dogs we have!

[tex]

A 10 is a (minimum) positive result, so you could certainly be right about a cumulative effect. You would probably test much higher, now.

Based on that egg test result, you should be fine with chicken eggs. However, when was that test? In May of 2005 my soy test result was negative at 8. Ten years later (September, 2015) my soy test result was 20. I retested because I had a reaction (an ileus episode where my digestive system simply completely stopped working) after eating peanuts.

Tex