My Mom

[lsedels]

Hello Everyone. I posted late last summer about my Mom, 91 y/o, who had been diagnosed with Collogeneous Colitis and we had many questions about the Enterolab (which we still have yet to do, btw).

Here's my current question. She was placed on Uceris 9mg last summer and it was working very nicely. She was switched to Budesonide 9mg in Nov. Still worked great. We started a gradual "weening" down in late Nov. 4 weeks at 6mg of Budesonide, then 4 weeks at 3mg. On Wednesday, Jan. 14, she discontinued completely. So it's been 2.5 weeks now. So far, so good.

But we all know that MC has a high likelihood of recurrence. My poor Mom has been carrying around diapers and towels in anticipation. It's been 2.5 weeks, but I have read that if it recurs ... it can recur days, weeks or months later (up to 2 months is what I've read).

For those of you who have been on a medication like budesonide where it did help and did come off it ... if the MC recurred, how long did it take?

Thanks in advance for your help!

[Gabes-Apg]

Larry
There is not an exact timing we can provide.
How long the medication helps depends on many factors, what foods your mum is eating, how much fibre she is having, what her Vit D3 level is, and if she is supplementing with Vit D3, what other medications she might be having.

As to what may happen next, ie will the D start gradually or will there be a volcano of D, again everyone is different, and the variables mentioned above apply.

Getting a cold or other virus that the immune system is fighting might be enough to generate a mc reaction.

This is the sucky part of MC, lots of unknowns and we are all different.
That is why we strongly recommend the gluten and dairy free, low fibre eating plan with Vit D3 supplementation to minimise inflammation, as it is the best way to minimise chronic type events.

Good luck, hope things stay manageable as long as possible.

[brandy]

Hi Larry,

It is good to hear your update.

Generally on the board we find that those who are GF and DF and not on any meds contraindicated for MC have low incidence of relapse after getting off of budesonide. (If they've been on budesonide/uceris awhile--like 4.5 months or more)

Incidence of relapse appears to be much higher for those who get off of budesonide but do not change there diets. We get a lot of new members from this scenario. There doctor tells them they are healed, they stop budesonide, then they relapse, then they find us on the net. Most of the scholarly articles/research about MC, budesonide and relapse involve patients who have not made diet changes.

I got off budesonide in January of 2012 and have maintained remission since then with diet changes. March of 2013 I had a 5 day relapse due to hormonal medication change. I went from oral hormones to lotion. I was able to quickly go back into remission with the use of anti histamines and meditation (stress relief.)

That being said we have a small percentage of members that are on long term low dose budesonide to maintain quality of life and have struggled to get off of budesonide without relapse for unknown reasons.

Hope this provides some insight.

Brandy

[brandy]

Larry,

I didn't answer your question. This is anecdotal but if she gets through the 8 week period she should be fairly safe. A lot of the relapses seem to occur in week 2 or 3 after last budesonide pill for those without diet changes. Again....this is anecdotal from being on the board.

Brandy

[lsedels]

Larry
There is not an exact timing we can provide.
How long the medication helps depends on many factors, what foods your mum is eating, how much fibre she is having, what her Vit D3 level is, and if she is supplementing with Vit D3, what other medications she might be having.

As to what may happen next, ie will the D start gradually or will there be a volcano of D, again everyone is different, and the variables mentioned above apply.

Getting a cold or other virus that the immune system is fighting might be enough to generate a mc reaction.

This is the sucky part of MC, lots of unknowns and we are all different.
That is why we strongly recommend the gluten and dairy free, low fibre eating plan with Vit D3 supplementation to minimise inflammation, as it is the best way to minimise chronic type events.

Good luck, hope things stay manageable as long as possible.

Hi and thank you. I have done a lot of reading on MC, and tis is the first I am reading of an association with serum Vitamin D levels. Can you say a little more about that? She is in vitamin D supplements but has been for years for bone health.

I understand that this is variable and depends upon the individual, I was just looking for the "maximum" experiences in terms of what the longest period of time was before someone had a recurrence after coming off a med like budesonide.

Thanks again!

[lsedels]

Larry,

I didn't answer your question. This is anecdotal but if she gets through the 8 week period she should be fairly safe. A lot of the relapses seem to occur in week 2 or 3 after last budesonide pill for those without diet changes. Again....this is anecdotal from being on the board.

Brandy

Thank you - that is very helpful.

As for DF/GF, although she is not eating as much fiber and dairy, she is still eating them. Since the stats do indicate that there is a 30% change that it will not recur, this is essentially the first "methodology" that she is trying. The other problem we have is by the time she was willing to do the endo test, she had been on the budesonide for a couple of months and there was a sense that the test might not have been fruitful under those circumstances. If she recurs, I have no doubt she will go back on the budesonide and then stay on a maintenance dosage of 3mg/day indefinitely, but at least at that point, we can send for the test and even if it's a week or two after going back on the med, we can still have a valid test result. At that point, we can experiment with coming off the budesonide and making more significant alterations in her diet to see if that works.

Thanks again.

[Gabes-Apg]

If you do a search within the forum for Vit D, you will see hundreds of discussions, and the many studies supporting the need for Vit D3. There are many here that have achieved vast improvement just by supplementation of a good dose of Vit D3.

Also, Tex has written and published a book about Vit D3

[lsedels]

If you do a search within the forum for Vit D, you will see hundreds of discussions, and the many studies supporting the need for Vit D3. There are many here that have achieved vast improvement just by supplementation of a good dose of Vit D3.

Also, Tex has written and published a book about Vit D3

OK, thanks.

[Gabes-Apg]

This discussion is about 10 posts down from this one

http://www.perskyfarms.com/phpBB2/viewt ... 05&start=0

[Gabes-Apg]

This discussion contains some good links from varying sources
namely the link about IBD's and Vit D deficiency

http://www.perskyfarms.com/phpBB2/viewt ... hlight=vit

[lsedels]

Thanks.

My Mom's VITAMIN D, 25-OH, TOTAL was 59 in December and she has been on supplement 100,000 IU per month for years (for bone issues). That was when she was titered down to 3mg/day of budesonide and approximately 3 weeks before completely discontinuing it.

Thanks again.