nauseous

[carolm]

Hi Wen,
I took Budesonide for about 4 1/2 months when I was in my first major flare that resulted in my diagnosis. For me, it helped with 2 things: it helped with the inflammation and I could absorb some nutrients again, and it bought me some time to figure out what to remove from my diet without getting sicker. It can mask some sensitivities- for example, I eliminated dairy and gluten immediately. After a few months I was better but still gurgling and eliminated soy and that improved. I thought I was okay eating eggs but found that once I was off of the Budesonide, I was reacting to eggs, but in a less severe way than the other allergens. I had no problematic side effects on Budesonide.

For me, I felt like Budesonide helped me get back on my feet faster and I didn't miss work, plus while I was on Budesonide my Dad had to have stents put in for an arterial blockage near his heart, then passed away suddenly about 6 weeks after that. I didn't have a big flare during that time (although I certainly had a few rough days off and on due to stress). The diet changes are the way to achieve remission and for me that took two and a half years. But I felt the Budesonide helped me to be able to function better in daily life while I figured out my path to getting my life back. I had no trouble titrating off of it when it was time.

Intense nausea was my constant companion during that time too, especially first thing in the morning. What finally helped me turn the corner on that was acupuncture. I was tired of trying meds for nausea and dealing with the side effects. I responded the first session and by my third weekly session it was gone. I continued to get acupuncture for another 4 months but we spread the appts further and further apart.

I certainly recognize what you are dealing with. As Gabes said earlier we have to find out own path, but I thought I would share mine with you since it sounds like we have some symptoms in common.

Carol

[WhirledPeas]

Carol,

Thank you for sharing! That's encouraging. It's so nice to hear that you didn't have side effects or difficulty getting off of the medication since you read so many stories on here about even worse flareups after getting off. By the way I love the quote on your signature. She's one of my favorite poets!

I don't normally have an issue with nausea. The nausea starts when I'm not going to the bathroom enough in comparison to what I'm eating and in this case since I'm so insecure with this unfamiliar severe flare that lasted/lasting a heckuva lot longer than usual. My body's telling me it needs a tiny bit more fiber and perhaps a little fat/oil (?) in order to move things along. I haven't had any oil, fat or Earth balance margarine which I normally use every day since the day this started on May 1 and was on and off D for two weeks. Meanwhile not eating much. During a regular flare after I'm done with BRAT diet for 5-7 days, I would normally be adding Earth balance margarine to my rice, toast, mushy carrots, eating chicken, etc. I just don't know what to expect this time so nervous to do my usual MO. I cut out gluten in the last week and stopped doing cream of wheat (substituted rice) even though it was helping. If I can go the bathroom "normally" more, then I won't have the nausea because things are not sitting in my gut for so long. When you first started the medication were you in the middle of D or were you stable BM wise from eating a severely restricted brat type diet?

Also how did you taper off? How many months of 9 mg, how many of 6 mg, how many of 3 mg and then did you taper the 3 mg every other day etc.?

So glad that you're doing well!

Wen

[WhirledPeas]

Erica,

I finally looked up what P5P is.

https://en.m.wikipedia.org/wiki/Pyridoxal_phosphate

Attaching photos of what I bought yesterday at Whole Foods:

[carolm]

HI Wen,
As far as tapering off Budesonide I was taking 9mg about 3 months and what tipped me off that maybe it was time to back off of the dosage was that I started have some mild abdominal cramping (whereas I hadn't before). I went to 6mg until I started having cramping again (2-3 weeks) and then went to 3mg another 2-3 weeks, then moved to 3mg every other day for a short time- like just a week.

But the reason I didn't flare, I'm sure, is that I used that time to get my diet in order. I had already eliminated dairy when I became ill before I had a diagnosis. The day of my first colonoscopy the doctor told me that when he didn't see anything wrong he took biopsies and that he suspected I had lymphocytic colitis. When I went home I looked up LC, found our site here, and went gluten free that day. I never, ever cheated or thought for one minute that I would be okay eating gluten again. I eliminated soy while I was on Budesonide. Eggs were moderately problematic once I was off of Budesonide and easy to eliminate. That first year I stuck to an extremely limited diet and rotated foods around so I only ate a particular food once a day. So if I ate chicken, rice and green beans at lunch, I ate ground beef, potatoes and carrots at dinner. The next day it might be beef, green bean and rice for lunch and chicken, potatoes and carrots at night. I also could eat ground turkey. There was not much variety, but it was what I knew was safe. I gradually added foods by challenging them-- eating a small amount for 3 consecutive days (while holding everything else in my diet constant)- and if I had no reaction then it was 'safe'. Usually if I was going to react it would happen after one day.

But if I had continued to eat the foods that I can't tolerate I have no doubt I would have been back into a major flare once I ended Budesonide.

Hope that helps.
Carol

[Gabes-Apg]

The B6 level of your drops is quite low (2mg)

ideally it would be good for you to have at least 25mg of P5P (active form of B6) if not up to 50mg of P5P
iHerb have the THorne P5P product (capsules)

[WhirledPeas]

Gabes,

I need a liquid. Not going to take any pills unless it's actually necessary because I'm having so much nausea gas and burping from motility issue from eating too much rice too long and now trying to slowly introduce soft carrots which is not very pleasant for about four hours afterwords with nausea and IBS feeling but no D.

So if there isn't a liquid version or sublingual tablet I will have to stick to this one. Haven't opened it yet. I haven't replied to your private message because having a rough day after a difficult night sleep.

Thanks for your reply/help. Food heals but it also is painful digesting after severe flare. Only eating for baby carrots today since about eight of them yesterday gave me terrible nausea.

[Gabes-Apg]

Sorry you had a rough day and bad sleep

re the supplements / food etc all any of us can do is the best we can in the circumstances we find ourselves in.
if you start taking the drops hope it goes well

[WhirledPeas]

Thank you