Camping and road trip food suggestions

brandy · Post by **brandy** » Tue Apr 24, 2012 8:27 pm

Hi Rae,

Brain muddling is common with this disease and I found Entocort could make my brain muddling worse. With the disease (even prior to getting on Entocort) I had it all: brain fog, dizziness, confusion, fatigue, ataxia (feeling like you are walking slanted at a 30 degree angle) Believe me it does get better. Again I don't like being negative about Entocort b/c it did help but I'm glad to be off of it. I found as the gut healed the rest of my body healed including the brain. Hang in there and hopefully you can make the trip! Brandy

mzh · Post by **mzh** » Fri May 04, 2012 12:16 pm

raemckee wrote:Gloria: that post was helpful. I wasn't aware that Olive Garden had a gluten free menu too. I noticed in your food intolerances that you've listed Pepto Bismol. I was recently told by gastroenterologist to add 3 pills 3 times a day to my 9 mgs budesonide, for 2 -3 weeks to help with the inflammation, stool volume and pain. How did you determine that it was a problem for you? I have new mid abdominal pain (umbilicus region) since starting the budesonide.
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Three points:

First point: Recently I was at a local Olive Garden and they had no special gluten-free menu items other than salad. Maybe it's not a uniform practice.

Second point: I did the Pepto regime in the early 2000s before starting Entocort. I couldn't tolerate it. It gave me awful tinnitus that I still seem to have to this day, to some extent. (Maybe it's from something else; I do have neck problems.) Then there's the black poos. It did slow down the bowels but it sure didn't solve any problems. Aspirin gives me tinnitus too. I think my bowel issues may stem from an overall salicylate allergy. I'll be trying to reduce those foods in my diet along with preservatives and such.

Third point: I have also developed a pain near the umbilcus a year after starting Entocort. I thought it was b/c I had a surgical incision right there in '08. I feel that pain when I'm in a flare or even a semi-flare. It actually warns me that something is about to go wrong soon! I never connected it to Entocort through. FWIW, exercise helps it go away.

Gloria · Post by **Gloria** » Fri May 04, 2012 9:27 pm

Recently I was at a local Olive Garden and they had no special gluten-free menu items other than salad. Maybe it's not a uniform practice.

As in many restaurants, the gluten-free menu is separate from the regular menu and must be requested from the waitstaff. I'm wondering if you requested a gluten-free menu.

The post where I was quoted was written a few years ago when I was still eating beef, chicken and tomatoes. I haven't eaten at an Olive Garden restaurant in over two years, but according to the link below, they are still offering a GF menu:

http://www.olivegarden.com/Menu/Gluten-Allergen/

I have used a GF menu in Florida, Michigan, and Utah in addition to Illinois. I believe that you can put in your location on the Olive Garden website to find your local restaurant and its GF menu.

Gloria

mzh · Post by **mzh** » Sat May 05, 2012 5:33 am

I asked the waiter for gluten-free dishes and he said there were no gluten-free dishes other than salads or just meats. (He may have been untrained even though he looked like an experienced waiter.) I ordered a sandwich without the bread and I got 2 thin slices of meat for $9.50. I was starving after eating and vowed to never to eat there again. This was Nov 2011.

mzh · Post by **mzh** » Sat May 05, 2012 6:32 am

raemckee wrote:Thank you for all of the suggestions. Now to get the abdominal pain under control so my DH doesn't cancel on me. Stayed home from work again today. Stepping down on the budesonide from 9 mgs. to 6 mgs. Any idea how long before I should reduce to 3 mgs? If anyone else suffered increased abdominal pain, did take a reduced dose help you?

Rae, there are a bunch of threads on weaning down and going off Entocort. I can't look them up for you right now, but give the search function a whirl. The consensus is that one must wean down very slowly - that is, stay on a particular does for months. I've tried to reduce my dosage after a month at each dose but it just didn't work for me. Actually, I've been on it since 2007 and haven't succeeded in staying off it entirely for more than 6 weeks. Since beginning of April I'm on 3 mg every other day . I'll stay on this dosage probably until Sept unless something else happens and I have to change the dosage again. No doc will tell you this though!

raemckee · Post by **raemckee** » Mon May 07, 2012 1:49 pm

Thankfully I think the symptoms are stabilizing after 7 weeks of dietary changes, budesonide and a week of liquid imodium. I still have the pain in my left side, the bloating and abdominal pain, and cramping with BM mobility but I'm back to normans which will be a big plus on the road trip. I have tried bending over to do a little gardening and that made it worse. Yesterday I tried mowing with a self propelled lawn mower and that also made the pain worse. It is hard not being able to be physically active like I was a few months ago.

Post by **tex** » Mon May 07, 2012 8:08 pm

Rae,

The improvement is certainly good news. You should continue to improve, so that eventually you'll be able to be more active again.

Tex

raemckee · Post by **raemckee** » Tue May 08, 2012 12:10 pm

Thank you Tex. This forum is a comfort. Got a call from GI clinic. They renewed my liquid imodium prescription but the clerk didn't know how long I should continue taking it. Until I get C? Are there limits to the time you can take it like the pepto bismol treatment? I am supposed to continue 9 mgs. budesonide until my next appointment in June as well.

Post by **tex** » Tue May 08, 2012 12:25 pm

Rae,

Our accumulated experience among the members of this board has shown that Imodium is generally safe to take as needed, for as long as, or whenever, needed. It doesn't cause any heavy metal buildup in the body the way that bismuth subsalicylate does, (bismuth is a heavy metal). Imodium seems to be one of the safest drugs available, with an extremely low risk of adverse side effects. Just avoid taking it if you don't need it, or if you already have C.

Tex