Help, I am sick...

[wmonique2]

Hello everybody,


I won't go to see my doctor because after $125 he'll say that he doesn't know what causes my symptoms (which is what he said 2 months ago). So I prefer to revert to you all since I get better advice here then from him...


I suffer from horrific nausea but I started acupuncture and it has helped. I am on 3xday mesalamine and was taking 1 entocort a day until I decided to go off it because acu was working and entocort keeps my blood sugar elevated. I had been on 2xday entocort like 2 months ago and reduced to one without noticing much difference.

I went off entocort 9 days ago and in the last 3 days I've been in bed starring at the ceiling. Pretty sick. No appetite. Nausea and heaviness.

I ate out last sunday---tilapia and white rice. I think the tilapia was cooked with a mixture of egg and flour then sauteed and served with a tomato based sauce. I noticed the egg/flour thing when I lifted a thin crust from the fish...

I have been sick since...no good. Too bad you all are not in my neighborhood, I could use some cheering and the company.

Anybody that wants to chime in, I am hearing you.

Thanks,

Monique

[nancyl]

Monique,
I am so sorry that you are sick and wish there were something I could do. When I was reacting I had a lot of nausea and giving up eggs at that time helped. You might want to watch the soy too. I was able to stay on Entocort for about 8 months and that helped me a lot. I would also recommend to watch sugar, veggies that are not cooked well and fruits until this subsides.

I'm sure others will come on and offer more helpful tips.

Hope you feel better soon.

Nancy

[maestraz]

Sorry to hear you're feeling lousy, Monique. When I have had nausea, ginger gum helps, and I also use CVS brand anti-nausea med. Your local pharmacy probably has an equivalent.

[Zizzle]

So you're saying you were glutened? I usually get some relief from pepto bismol tabs and L-Glutamine, but I'm not on any other medications for the MC. Pepto might be overkill with mesalamine. I imagine you've tried ginger tea and other remedies for nausea? Are you having major D? My glutening symptoms subside shortly after all the offending meal has exited my system, so I tend to let nature take its course...a chain me to the bathroom for 24 hours.

[wmonique2]

Thanks everybody. I'll reply collectively...

I haven't tried ginger tea. I tried pepto and that made it worse. I already take glutamine. I have no D. Just a general feeling of malaise with nausea and heaviness.

I've had that same tilapia at that restaurant before but never had such a reaction.

I am starting to think that getting off that one/day entocort was a mistake. I am still at the stage when I watch every bite of everything that goes into my mouth. No eggs, no soy, no gluten, no sugar, no vegies or fruits with roughage. Mostly rice with chicken or fish. Right now just pureed soup and GF crackers and baby fruit jars.

I just ordered the enterolab kit and will send it off next week...

I think it was Leah who mentioned that Tex said that withdrawal from Entocort is noticed after 9 days (not sure about that).

[carolm]

HI Monique,
I'm sorry about your setback. My experience with titrating down on Entocort: even when I was on one a day I could eat eggs. After i was off Entocort, I found I could no longer eat them or have egg drop soup. Within an hour I would be gurgling and in a few hours headed to the bathroom and although it wasn't horrid, I was clearly reacting.

Maybe that's the case with your fish dinner. On one Entocort you didn't react, but off of it there's enough of something problematic in there that you now react to. Soy is the worst for me. My Enterolab numbers for soy reaction were higher than my gluten numbers (although all of the big four were over the limit on my tests).

I believe much of my nausea was gastritis or some inflammation of the stomach. In fact now that I look back I believe I had inflammation all through my GI system, upper and lower. Upper might have even been more problematic for me. Mine improved when I took Dexilant. It's a PPI and although we often discourage those, it appears I need it. When I try to reduce it I'm usually reaching for the Tums by late evening. I don't know if Zantac or a PPI would help your situation, but it did help my nausea. Even if you were glutened I would think it should resolve itself soon.

take care,
Carol

[wmonique2]

Hi Carol,

Thanks for your reply and for sharing your experience. It sheds some light on the entocort situation. I took one at lunch today and I'll stay on it until I see what enterolab says about my sensitivities.

I don't know about the PPI because I am already taking mesalamine and entocort ;-) Don't PPIs need like a few days before you know if it works or not (not sure about that)? Usually the more stuff i take, the worse it gets for me...

Anyway, I am doing everyday acu treatments thanks to you. It helps. My manuals tell me that every day is appropriate for my acute condition. I am even doing it on my face now for the few lines I have :-) Why not? I am stuck at home laying on a couch anyway and being sick and unproductive...

Regards,

Monique

[tex]

Hi Monique,

I'm sorry that you're having a setback. I have to agree with Carol and others that weaning off budesonide can be a very treacherous period of time. Relapses can occur anywhere from a day or two up until about 8 weeks after discontinuing the drug. And during this period, foods that were previously safe may cause a reaction, so extra caution is needed. Anyone who makes it past 8 weeks without a relapse is probably home free.

Since the problem with discontinuing a budesonide treatment appears to me to be due to a rebound in the numbers of mast cells, I believe that antihistamines can be almost as helpful as an anti-inflammatory drug for some of us, but not necessarily for everyone.

Nausea and/or dizziness were the two symptoms that kept me from working, back when I was still recovering. I can tolerate D, as long as it's not too frequent, but nausea and vertigo will put me back in bed quicker than just about anything.

I hope this passes soon,
Tex

[wmonique2]

Hi Tex,

I had no idea that budesonide could be that treacherous. I am learning really quick. I went back on one today, I am just fed up with being sick and in bed. I'll stay on it until I get my enterolab test results and have a better picture.

Yes, dizziness and nausea do keep me in bed. Hard to feel cheerful when you're alone and sick :-(

The forum is keeping me busy now and that's a good thing...

Thanks for the info. As always, very helpful.

Regards,

Monique

[carolm]

Monique,
Yes with Dexilant it was 3-4 days before I saw changes. It's possible that I am just dense, but I got off Dexilant twice. It was the 3rd time that I had to start it again that I could see the connection. It's helpful but it did not get me stronger and more resilient like acupuncture did.

I'd say trust your instincts too. If more meds only complicate things then don't go in that direction. Since you do acupuncture you know that the healing will come when the path is cleared for your body to be able to heal itself.

I hope tomorrow you see a big improvement.

I didn't know acupuncture would take care of any lines on my face-- I need to have a talk with my acupuncturist!!

carol

[wmonique2]

Thanks Carol! great tips as always...

Yes, acu will build collagen where there are lines. Lines build up when collagen starts thinning...usually around the mouth, you know the ( and )
around your mouth, between the eyes, frown lines, both sides of the nose. He'll put needles there. Take a pic before and after, and after like 5 treatments, you should see a significant improvement.

So, YES, talk to your acu guy/gal! Let me know how it works! You can see some samples of facial acupuncture on Youtube. Plenty of those!!!

Warm regards,

Monique

[Leah]

So Sorry Monique. I hope you feel relief soon. I am off Entocort now for maybe three weeks, but am pretty scared that I could relapse at any time. I am now playing with antihistamines and they seem to be helping, but they make me feel slightly lightheaded, so I don't know whether i want to take it every day. I think I may look for the supplement DAO , and see if that helps me stay in a good place.

Keep us posted
Leah

[wmonique2]

Hi Leah,

I've been thinking about you this week...I knew that you went off your entecort and saw that you were trying the antihistamine. As you saw in my post I went off like 9 days before I had a slamming of a setback. I believe I was glutened (is there such a verb?) last sunday with tilapia that was run through an egg wash and flour and that triggered the whole hellish nightmare. I had no idea it could be that bad. Next time I want to get off anything, I'll ask this panel first. Learned my lesson.

I went back to entocort 2 days ago. I am sending my sample to enterolab on monday and I want to wait until I see what my sensitivities are before I attempt it again.

I did try antihistamine a couple of days ago for one day only, not sure it did anything, since I was so sick and I felt light headed too...All I know is that I slept all day even though I took the non-drowsy form but I believe it was because I was so sick.

As for you, well, you read what Tex said. You have to be super vigilant now and for at least 8 weeks. So tread very carefully. And like you, I wonder for how long you'd have to take the antihistamine. Although I know some people who have allergies that begin taking it at the beginning of the allergy season and stay with it for months. Maybe take it everyday now until you pass the 8 weeks and then every other day. I know that's what I'll do until I can see more clearly my path. This is all so treacherous...

What supplement is DAO? I need to read up on it..

Good luck and keep posting to tell us how you feel.

Warm regards,

Monique

[tex]

Monique,

Diamine oxidase (DAO) is an enzyme produced by the body to regularly purge excess histamine from the system. People who have an IBD tend to be low on DAO and this allows histamine levels to slowly build up to an abnormal level, which can lead to symptoms. Histame is a replacement for DAO, and some people who have histamine-based symptoms find it to be helpful for reducing their symptoms. IOW, it's another treatment option for mast cell issues.

Tex

[wmonique2]

Hi Tex,

I just read up on it...Thanks for your answer.

I would seem to me that it would be a better alternative that all those antihistamines out there since it is an enzyme (essentially a protein) that we already produce. Just a thought...Antihistamines leave me foggy and light-headed. I might be a better alternative for Leah who is on the antihistamine wagon already. She may have a point.

Regards,

Monique