Budesonide Quick Question

[Pebbledash]

First off, apologies for my outburst.
Second, thank you for your messages. I will read them carefully, both for the moral support and the practical suggestions.

Underneath it all, I have been scared. But I will try to be patient.

[jlbattin]

No apology needed..........we're all human......and we've all been where you were.............

I was terrified that I would NEVER be able to leave the house again...............and now, 3+ years later, there's not much that stops me now.........I go and do, get on a plane, go on trips, go out to eat, etc...........things I thought I would NEVER be able to do again...............give yourself time to heal! Be patient with yourself!

[tommyboywalker]

Paul,

I truly do think that the Budesonide will work for you again. But if there is a boatload of inflammation to battle, it takes time. Even though it feels like an eternity to you, I think it will still work for you.

It took me 10 days to see any sort of change for me with Budesonide and that is the first time around for me with the drug.

Stay the course man; I think much better days are not far ahead for you!!

[Pebbledash]

Paul,

I truly do think that the Budesonide will work for you again. But if there is a boatload of inflammation to battle, it takes time. Even though it feels like an eternity to you, I think it will still work for you.

It took me 10 days to see any sort of change for me with Budesonide and that is the first time around for me with the drug.

Stay the course man; I think much better days are not far ahead for you!!

Thank you, Tommy, and everyone else for your words of encouragement based on your real life experiences. Gives me hope.

I have been on it for 9 days and there is not the slightest resemblance of anything like a stool formation--just the usual fountain of water. On thing: I have somewhat less urgency and more control.

My fear is that I have been inflamed too many years without effective proper treatment, the first go at Budesonide compromised by the stress of my neuropathy diagnosis, plus I already take (different) steroids because I have Addison's disease. I keep reading that budesonide should work in a few days, and that makes me anxious (and because it worked straight off the bat last time). I will keep going with it--I have no choice.

So thank you. That it worked for you in the long run makes me feel more hopeful.

[Pebbledash]

First things first— what others think is not what matters. What matters is that you do what you need to in order to get your health back. You have enough burdens to deal with. Don’t add more to your heavy load by worrying what others think. They don’t get it and in the long run their opinions really aren’t important.

Thanks Carol--this is important for me to remember.

PS I tend to eat what is nominally a very balanced, healthy diet. Strictly gluten free. Mainly whole foods.

I had been supplementing Konsyl (like Metamucil) for a month or two but I have now stopped this. I was assuming that the Budesonide would kick in straight away.

Honestly, I am so confused about whether fiber helps or aggravates, having been told so many conflicting stories over the years; Konsyl seemed to help a bit, but everything I have tried--whether imodium or pepto bismol or low carb or whatever--has really been like putting sticking plasters on a gaping wound.

I always take lactose-free milk, but since perusing this forum I am trying life without dairy. I am also taking an anti-histamine along with the Budesonide.

[carolm]

Definitely no reason to apologize. This is the place to rant and rave. No one else gets it like our fellow MCers here on the forum.

Not to overwhelm you with information but since you are in a major flare with chronic watery D, I’m inclined to suggest that you stop the fiber supplementation for now, and don’t eat raw vegetables or fruits. Instead eat well cooked (mushy) vegetables and stick to turkey, chicken, lamb, and beef (unless you have reason to think you react to any of those). Stopping all dairy is a good idea. It’s casein that people react to in dairy, if I remember right.

Finally, you really might want to check into the Enterolab testing. For me it was like the fast track to an elimination diet. I would have had no idea I was reacting to pork, for example, had I not had the tests. It would taken me a long time to figure that out on an elimination diet. The staff at Enterolab will be able to tell you if taking Budesonide will affect the test results.

I hope the rest of your week goes better and you turn the corner soon.
Carol

[Pebbledash]

I just read that tricylic antidepressants are on the proscribed list for MC. I was prescribed nortriptyline daily to help control my peripheral neuropathy diagnosed last fall. I tried to taper off this dose a few months ago but my neuropathy got really bad, so I am stuck.

I am in a classic bind, like an old man in a nursing home--except my nursing home has been my apartment all these years--medications for one thing exacerbating another.

Paul

[carolm]

Hi again- Paul, I just read up on Addison’s disease. Are you being treated for this?
I can see where Addison’s can complicate your progress.
C.

[Pebbledash]

Carol--yes. I was diagnosed with Addisons about 30 years ago, and it has never really impacted me once treated with corticosteroids. Some off-days for sure, but not bad in the scheme of things.

In the last decade, though, things got complicated. After many many years of IBS-like symptoms, I was eventually diagnosed as a Celiac. When a GF diet didn't improve things, I was shortly afterwards diagnosed with MC.

For many many years, my idiotic gastro told me that there was no treatment for MC, beside chugging down Pepto Bismol and imodium, even when I told him on multiple occasions about what I had read on this forum. I lived a life of constant accidents while teaching, airplane journeys doubled up in my seat, missed social appointments, lack of friends . . . etc etc.

Last year, I changed my gastro, and she put me on Budesonide straightaway. It worked like magic--solid normal stools from the first day or so for the first time in years. Except, midway through the course, I developed symptoms for what later became diagnosed as Idiopathic Peripheral Neuropathy . . . and with the anxiety, sleepless night, literally pain in my tummy, of course the MC returned with a vengeance even before I completed the final dose.

It took months to diagnose me with Neuropathy. I was terrified I had MS. For the last year, I have been coming to terms with the neuropathy, physically, mentally, emotionally, and I put the MC on the back burner, I guess thinking that when I was ready, I could restart the Budesonide treatment. I was, also, to be honesty, a little fearful of the Budesonide as I correlated it with the start of the neuropathy.

Because I live 10 minutes walk from work, and because I am a college professor, I have been able to "conceal" my MC as I spend so much time in my home-surroundings.

I lost both parents in the last two years, and I work abroad--originally from UK, but working in the States. It has given me opportunities but the tenure process was also very stressful and took a toll.

I have reached a kind of stasis with the neuropathy (well, that's ongoing, but it is a whole other story) and am ready to win back a life that I have not really had for years and years.

And now, to my shock, the drugs ain't working (well, not yet).

So I have been walking around with "invisible disabilities" for about a decade, and, basically, I have had enough. I want my life back. And I agree with you--I should stop caring about what other people think. I have done my bit.

[Lisa_D]

Hi Paul,

I too am on medications that complicate my MC so I just wanted to let you know that you're not alone -- it's tough to be in that bind. I tried to taper off my other medications and while they made my other condition worse, it wasn't clear if they were helping my MC, so I'm back on a med that is essentially making my MC worse -- these are not easy decisions to make.

Also, while I was fortunate to have success with Entocort I've tried a few other meds on this journey. Specifically, Lialda helped me when I added it to the Entocort and was in a bad flare. Diet is key and simple is best but I hope you know there are some other meds out there if the Entocort isn't working for you (although I wouldn't give up hope on the Entocort yet!). Everyone is so different with their meds but hopefully your doc will go through all the options with you.


Wishing you well,
Lisa

[tex]

Hi Paul,

I agree with Lisa, if budesonide doesn't provide control in another week or so, there are other medications that you may want to try. I don't know if cholestyramine has come up in this conversation, but it's another option, especially in cases that are refractive to treatment. Bile acid malabsorption (BAM) has been shown to be the cause of diarrhea in about 60 % of LC cases and 44 % of CC cases. Unused bile is normally reabsorbed in the terminal ileum and recycled by the body. If it passes into the colon (unabsorbed), it tends to cause diarrhea. This also happens following gallbladder removal. The dose has to be regulated for optimum results, but for some cases, it is virtually a miracle drug, resolving diarrhea in a similar percentage of cases.

Cortisol regulates bile uptake, and this is at least part of the reason why corticosteroids are helpful for MC, and why some people gain weight while taking budesonide (fat is absorbed rather than lost). But cholestyramine has the opposite effect — it binds bile salts and makes them unavailable, and then escorts them out of the digestive tract. This often stops the diarrhea. It also binds the fat that is entrapped by the bile so that most fat in the diet is lost with the bile. This may be good or bad, depending on whether fat malabsorption is contributing to the diarrhea and whether or not the patient can afford the calorie loss. Another downside is that cholestyramine interferes with any other meds and supplements. They must be taken at least two hours before the cholestyramine, or at least four hours afterward to prevent loss of efficacy (of the meds and supplements).

Also, as you have probably noticed, recovering from MC can be almost a full time job and requires minimizing stress. All of us have had a stressful event or series of events that provide an environment favorable to the development or exacerbation of MC. You evidently have earned tenure, if I read your post correctly. It's to late for this option this semester and probably the next, but if you could take a sabbatical it would really help to reduce the stress level and allow you to perfect your treatment and control of this disease.

I hope that some of this is helpful.

Tex

[Pebbledash]

Lisa--

I just looked up Lialda. Is that a medication I could take alongside Budesonide? To give it a boost?

My gastro mentioned trying another corticosteroid beginning with P instead of budsonide, but when I researched it I read bad things. Prednisone??

I think I read on this forum that some people have used it as a booster alongside budesonide, then just continued with the Budesonide.

Thanks
Paul

[Kilt]

Paul, sorry to hear about your multiple medical issues and confusing drug interactions. I'm new to the MC fight, but as to this one issue . . .

Honestly, I am so confused about whether fiber helps or aggravates, having been told so many conflicting stories over the years;

. . . I believe fiber definitely aggravates an inflamed colon that is consistently generating diarrhea. My doctors believe this and it is confirmed by my own research. Whatever benefits fiber may have as a laxative for constipation (or for supposedly lowering cholesterol), it is highly likely to be physically rough, scratchy and irritating to an inflamed tissue surface. Consider a burn, wound or other inflammation on your outside skin. It would aggravate that inflammation to rub it with sandpaper, a Brillo pad or any other abrasive substance. It makes sense that the inflamed skin on the inside of your colon would react the same way.

Whatever diet I eat or experiment with, and I'm very unclear about whether I actually have food intolerances, I'm keeping them all low fiber even while on budesonide. So far, so good.

Stay strong.

[brandy]

Hi Paul,

Stay strong. We've walked in your shoes.

Some random thoughts to investigate.

1. Entocort--Since I've been on the board we've had probably 4-5 Europeans who stay on the high dose of Entocort
(3 pills) for 3-4 months before it kicks in. The European docs seem to be ok with this. Maybe evaluate after
30-45 days to see if you are getting improvement particularly since it worked well the first time.

2. Metanx-Have you googled metanx studies for peripheral neuropathy. These are the prescription B vitamins
that many of us take with no bad effect. Metanx is the prescription version and there are a number of studies
about it if google Metanx and peripheral neuropathy. Most of us take the over the counter version which is Thorne Methyl Guard Plus. When I took the THorne Methyl Guard Plus it took about 6 weeks to kick
in for my situation which was brain fog. Thinking this is something you may be able to use to ease off of the contraindicated for MC prescription meds for neuropathy with the Metanx or OTC version. i.e. I'm thinking if you take this for awhile you
may be able to ease off the contraindicated prescription neuropathy meds.

3. Cholestyramine (Questran). I've used this (at a different time from entocort). It worked for me within 3 days. It is pretty
benign stuff that binds up the liquid.

4. Ditch the fiber.

5. Prednisone generally not recommended. It is considered antiquated treatment and the few that have been on it have
had side effects and tough time getting off.

6. Sun--vitamin D3. Try to get some midday sun on lunch breaks.

7. Other than the Thorne Methyl Guard Plus consider ditch OTC oral supplements for awhile.

Stay strong. Brandy

[Pebbledash]

10 days in. I am worse than when I started the Budesonide. I took it first thing this morning, before my usual corticosteroids for adddisons. I have not had dairy, nor eggs.

I taught today holding my butt cheeks together, spraying water when I run to the lav. I am at my wits end. My first consultant played this disease down. I read that it would go into remittance. All I have done is managed year on year on year.

Thank you Brandy, I guess I just keep going with the budesonide . . . God, I wish I could remember what it was like to have a normal stool.

Paul